My Rheumatoid Arthritis Story: Signs and Symptoms Before Diagnosis
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- Опубликовано: 6 окт 2024
- This is my RA (Rheumatoid Arthritis) story. The signs and symptoms that led me to making a doctor appointment, what diagnosis felt like, and how those around me reacted to my RA diagnosis.
When it’s time for a second opinion: • My Second Opinion Stor...
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There’s no way you’re 44(46 to 47 now)! You look amazing!
I’ve had RA for 10 years now. It took 2 years to get a diagnosis. The worst 2 years of my life. Finally putting a name to what was going on with me was a huge relief. I’m still struggling with pain every second of everyday even with treatment. The treatment just gives me a little mobility. I honestly wouldn’t wish this on anyone, even my worst enemy.
I’m now 46. 🙂 Thank you for the kind compliment. 🥰 I totally agree that I wouldn’t wish this on anyone. It’s definitely a difficult (and painful) road. Thank you for sharing your story with me. I’m sending good vibes your way that treatment continues to provide you mobility. Hugs, Warrior! ❤️
I'm hearing story after story and reading comment after comment of people eliminating all RA symptoms and getting off all meds by switching to the carnivore diet. Also the plant based diet seems to help tons of people with RA.
Yep I thought she was 30!
I was thinking...I am alone but now I realize that I'm not alone in this journey....Life is not same as before....
Thanks for sharing your story! I just got diagnosed with RA 2 months ago. For me it was a relief as I had known for 2 years that something felt wrong. My RA is Seronegative so harder to get that diagnosis. Honestly I went to the rheumatologist ready to be sent home with no diagnosis again as I thought it was all in my head (psychosomatic), but it wasn’t. Now I’m trying to navigate things, as a nurse I at least understand how health care works. But very much struggling with my management about accommodations for my job. It’s funny how much we mask what is going on until we just can’t anymore. Your experience was very helpful as you described a lot of symptoms I have had. I will remember to look for the light at the end of the tunnel! 💡❤
I’m so sorry you have found yourself on this journey but I totally understand about finally having a name to put with all the symptoms you’ve been experiencing. It sounds like you found a caring and educated physician. I’m sending good vibes your way that management at your job can help with accommodations. I understand that journey as well. I had to ask for some accommodations in my career. I’m glad my story can help you a bit! I hope you find stability soon. Hugs, Warrior! ❤️
For the past few years, I've been going to the doctor and they tell me nothing is wrong and I'm like going crazy.. I was born with arthritis but it had gotten better with age. Now at 23, I barely want to do much of anything bc I'm so stiff and achy all day. I've felt crazy for so long.
May I ask how you were diagnosed with seronegative? I suspect I have the same and habe so many questions..im really afraid.
@@VixinafulI'm seronegative. I'd been complaining of a variety of symptoms such as swelling, pain, fatigue, rashes. However I was in pain management at the time for a previous, unrelated injury and that meant being dismissed. Often.
Only when my finger swelled so much that it snapped when I tried to bend it did any dr or nurse actually take me seriously. It wasn't my regular provider either (thankfully). I was then referred to rheumatology and quickly diagnosed.
[Incidentally I'm no longer in pain management and would discourage anyone I care about to avoid it as much as possible. It is a dead end. I was persistent in finding an alternative. No one else was the least bit interested so persistence was necessary.]
I would recommend taking someone with you to dr appts. Make a list of symptoms, when they appeared and what makes them better or worse.
You must be your own advocate.
Good luck.
@@vinlago I have noone to come with me but I sent a list to the rheumatologist who dismissed me two times already and along with it a threat of reporting them if they didnt see me. It worked, in three months they'll see me, lol!
My doctor says she has rheumatoid herself but also says if seronegative it will still show in the CRP so she says "You do NOT have rgeumatoid, its in your head" but I read on google it doesnt in 60% or newly diagnosed. Which is it?
Three years. It took me three years of intense pain and disability to get a diagnosis. In the end I had to beg them to test me for RA. Thank goodness for my rheumatologist, whom I started seeing after that. Seven years later I still have issues, but with the help of biologics I feel MUCH better. Thank you for your story and this chance to vent.
I’m so happy to hear you have a great Rheumatologist who has helped you find stability and a medication to help. I’m just so sorry it took 3 years and a ton of advocating for yourself to get there. I’m sending lots of love for continued quality of life. Thank you for sharing your story with me. 💜💙💜💙
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My doctor diagnosed me with fibromyalgia, and I'm suspecting that I also have rheumatoid arthritis. My shoulders hurt badly, and every time I reach for something, my feet hurt. They're always stiff, and my joints ache as well. I have lupus SLE, Raynaud's, and APS. Thank you for sharing your experience; I wish you all the best!
Interesting about the sore throat...i had that, then mild nausea, loss of appetite and gradually my joints started hurting constantly with movement. I also have breast cancer and was going through treatment for that, so at first i confused it for side effects. Thank god I had good doctors who thought outside the box. Hope everyone starts to feel better. Prayers xx
You are truly a warrior, I can’t imagine how difficult it would be to be diagnosed while battling breast cancer. Thank you for sharing your story with me. I’m glad you had amazing doctors who put the pieces together too. I hope you are finding stability now. Hugs, Warrior! ❤️
In my early forties, I started experiencing arthritic pain in my arms and hands. Some nights I could not sleep. I have not talked to my doctor, because I knew there was no cure. And one day as I was having a small talk with a colleague at work cafeteria waiting for my turn for the microwave, I learned exercise could cure it. He said he had RA and it disappeared after he started to run every morning. Now, he said, he runs every morning rain or snow. He even runs some local marathons, because he got good at running. He was around 50 years. I decided to try. So, I started to run for 15 -30 min in the morning either in the neighborhood or at the gym. Sure enough, the pain was gone completely after a while. I have lived pain free for 15 years. Then the Covid came, I stopped exercising. Now after 3 years of sedentary life, the pain started to come back. Not as bad as before, but I know it is back. I have developed eczema and Gerd (heartburn) around the same time as my initial RA symptoms started to show. All started with with my new favorite food spaghetti. I would eat spaghetti with Ragu sauce 3 -4 times a week. Spaghetti sauce is an absolute poison for your immune system. It probably destroys your biome (the good gut bacteria) or your stomach lining. I learned the hard way. If I did not spaghetti sauce as much as I did, I am firmly sure I would not have all these immunity related problems. Fresh tomatoes seem to be ok, but I can’t eat spaghetti sauce. I don’t know if it is the preservatives in it or the manufacturing process of the sauce produces a harmful chemical. I am a medicinal chemist in drug discovery. It is surprising how little effort goes into studying the health effects of various foods. Maybe it is not in the interest of the food and drug industry. As long as it does cause a cute adverse health effect, no one cares.
In short, if you are young enough to run and have a healthy knees and feet, try running to see the effect for yourself. If you have osteoarthritis, it is not recommended.
Thank you for your comment. I certainly agree that exercise and the food we eat does have an impact on our health and pain but I don’t agree that it is a “cure”. I can’t run (my husband is a runner - like marathons and such) but I do walk regularly and daily even on high pain days. I know the minute I quit moving I’m going to lose my mobility. I had very little mobility at the beginning of my journey. I use a lowFODMAP/anti inflammatory diet. For me sugar and alcohol is an known issue to cause me more pain. I’m lucky because my medical team often discuss and educates me on good lifestyle changes in conjunction with my medications. I’m glad you found something that works for you. I hope you are able to regain the stability you had.
Thank You!!! Thank you for sharing your story, I feel all that you said to the core of my body. I go through the EXACT same thing and have felt alone before seeing this when it comes to pain, not being able to lift your arms and the entire list of what you shared. I'm a jokester too, when I couldn't lift my leg to take a step onto our deck, and said wait to my family that my body hasn't yet responded to my brain and had to talk itself into taking the step. They laughed and said WTH okay. I said no really just pull me up all while pain was setting in. Also, I look like a turtle or rolly polly at times trying to get up off my butt or knees. It's ridiculous really and there are way too many moves involved with just getting up off my knees. The pain is real the struggle is real and we are all in this together. I'm happy you have your family to help get you up. Stay strong and thanks again for sharing it means a lot. 🙌😊
You definitely aren’t alone. I’m glad you found my channel! Thank you for sharing your story with me. I hope you find stability soon. I’m sending you extra strength! Hugs, Warrior! ❤️
I’ve just come across your video, thank you so much for sharing. Your story ( symptoms) is similar to mine, I was diagnosed with RA in 2020 and I’ve not found any medications to slow down the inflammation yet.😂
I wish you well
Thank you! Well wishes back your way too! ❤️
@ElainesAutoimmuneAdventure thank you❤
I just found your channel ~ thank you for sharing your story. I’m a cardiac/vascular sonographer who is seronegative so the RA diagnosis didn’t come quickly and after treatment for a few months rheumatologist is now leaning toward psoriatic arthritis. Like many viewers, I was told stress, inactivity, etc while dealing with challenging pain. I was lucky enough to have had an orthopedic surgeon (another wrong direction) take the time to review all my symptoms refer me to my rheumatologist, for which I am eternally grateful. This isn’t an easy journey but when we have people such as yourself sharing, it helps us all tremendously. Many blessings for continued health and kindness ❤
Thank you for commenting and for sharing your journey with me. It isn’t an easy journey and I’m glad I could share on RUclips a little of what we all go through. I hope you are finding stability in your diagnosis. ❤️ I’m sending good vibes your way! Hugs, Warrior!
Thank you for sharing your before diagnosis story! It’s really helpful for those who suspect RA and need to know what to look for. I’ve struggled with fatigue for 4 years now. Been to oodles of specialists and functional medicine, integrative, all the regular PCP people etc with not a whole lot coming out of it. We discovered Celiac disease, I had breast implants removed with little improvement. Now over the last two months I’ve started having joint pains bilaterally in toes, fingers, wrists, shoulders and neck pain. The joints are progressively getting worse. Sore throat off and on. I saw my PCP she ran tests for RA and my CRP came back slightly elevated at 1.5 and ANA really elevated. RF negative, sed rate negative. Appointment with rheumatologist next week finally. I hope I get some answers. 🙏
I apologize for the late reply but I really hope your Rheumatologist appointment went well and that the doctor was able to offer some advice for diagnosis and treatment. Thank you for sharing your story with me! I’m sending good vibes your way that you start to feel some stability soon. ❤️
I am 74, my problems started when I was 50. It took five years to get the diagnosis. The doctors thought that I was mentally unstable. I didn’t have sore throat and didn’t feel tired. What I had was pain, lots of pain all over my body, my hands were swollen from time to time, I had a hard time walking and doing routine activities. I tried to get out of bed one night and realized I couldn’t move. I had a blurry vision and screamed when I was touched by my husband. He called an ambulance and went to the emergency room. The doctor thought I was suffering from gout but he wasn’t sure. Finally a rheumatologist showed up, started an IV with anti inflammatory meds, took my blood and told me I had RA and poly myalgia. I took and still take heavy duty meds, but although I have mild attacks ( very seldom) I am doing well. Along the way I ended up with fibromyalgia so more meds were added. I have blood tests on a regular basis, checking my lungs, liver, heart and kidneys. I hope there is a better way of diagnosing it at very early stages, no one deserves to go through what I went through
Diàgnosis
Well, your story sounds almost identical to mine. I just turned 24 years old and this morning I got diagnosed with rheumatoid arthritis. I have been suffering in severe chronic pain for almost a year. I thought I was alone until I heard your story.
Thank you so much for sharing.
I think I am starting out on a similar journey: Both hands, mostly thumbs and wrists - I have had carpel tunnel syndrome operations on both hands. Both shoulders give me acute pain and my jaw in particular gives me a lot of discomfort. The only way I get relief from my jaw pain is to chew gum.
I have been referred to see a rheumatologist and in the meantime I find workouts in the gym do help.
I am finding my voice gets hoarse very often also and I have lack of sensation in the skin on both forearms and one leg.
You are a brave person. I was diagnosed 2 years ago. I have an awesome Dr and I am on a biosimilar. My RA is in check. I had many of the same symptoms as you described and went through many periods of depression. I am 69. Thank you for sharing your story. I hope you have been able to get the disease in check. You have many good years ahead of you. Stay strong and be kind to yourself.
Awe, thank you so much! 🥰 I’m so glad you found my video and thank you so much for sharing your story with me. Other warriors truly inspire me with their bravery. We all have such a special bond. I’m so happy to hear you have an awesome doctor…that really does make a difference. I too am blessed with an amazing medical team led by a caring Rheumatologist. I’m sending good vibes your way for continued stability! Hugs, Warrior! ❤️
@@ElainesAutoimmuneAdventureCan it causes severe tremors and numbness in body ?
Such an amazing story of courage and pressing on. 👏👏👏 raising awareness for RA 🦋 Lupus and scleroderma 💙
There are so many with this same story, I am honored to be able to share mine here. Thank you for watching! 💙💜💙💜
I hope you feel better I know what you’re going through I’m sorry it is hard . I have most of what you have. Sometimes I can’t give wash my dishes it used to upset me but now I realize that this is my cross and I’m gladly carrying it for Jesus. I think the hardest is having your family except it ❤️
Thanks for sharing your story. My rf is pretty high but reactive protein is normal and ANA is negative. First appt with rheumatologist. In about two weeks. I have all the same symptoms as you but add horrible muscle cramps, so bad the almost bring me to tears, and it’s my whole body not just one or 2 muscles. It’s such a horrible way to live. Hope you’re feeling well and getting along ok :)
Hi..I watch my mom go through these changes of RA until she finally received her diagnosis in 2016. It has left her deformed in her left arm and totally disabled. My journey also started in 2016 and it’s a fight. I’m positive for autoimmune disease with a very high scl 70 and now my RA factor is moving up. My dr thought I had carpal tunnel for years bc of the sharp pain in my hands and wrist. I thought it was RA for the longest but was negative. I finally have an appt in Oct. I’m ready to take this on, it’s truly been a ride. Thank you for your story. Take care.
I’m so sorry you have found yourself on this journey. I’m sending good vibes your way for your appointment in October. I hope they are able to give you answers and are able to help you quickly. ❤️ Thank you got your comment and sharing your story. Hugs, Warrior!
thank you for sharing your story :)) tomorrow im calling the rheumatologist to see if i can set up my appointment (i have a referral but of course its taking forever for anything to happen). im genuinely terrified bc part of me wants it to be RA and for my valid suspicions to be confirmed bc i have every symptom and sign of it. but a bigger part of me wants it to be something that is easier to live with. I'm 19 and ive had joint issues since i was 12 but it's gotten nearly unbearable since 3-4 months ago. its isolated me physically and socially and i know if i dont get help very soon its gonna start impacting school. i LOVE learning and i love university but it becomes a lot less fun when typing is so difficult because my fingers cramp up every 2 seconds. or bc walking to class is so painful it takes me 30 minutes to even be able to start paying attention to the lecture
I’m 40yrs old, I just have got referred to a rheumatologist and he’s almost certain that I have RA. I have very high inflammatory markers, CRP and send rate. I’m the same with all of the life difficulties, no longer being able to do things, normal everyday things. Mine started with bilateral shoulder pain. It’s been over a year and just now getting answers
I’m so sorry you have found yourself on this journey but I’m hoping you have answers soon so you can begin a path to better quality of life. I’m sending extra strength your way. Hugs, Warrior! ❤️
@@ElainesAutoimmuneAdventure my results came back as positive for rheumatoid arthritis. I will be starting treatment soon. I’m glad it was caught kind of early. I hope your journey continues to be a positive one! Thank you for the strength and hugs! Same to you ❤️
I am so glad you shared your diagnosis. You are describing my life verbatim. Minus the rocks. Because instead it was my son’s bed I was changing when I went down to my knees. I have just been tested and am awaiting the results. Anyway, I hope you have found wonderful providers that have helped you on your path.
My heart goes out to you having this dis-ease in your body, at such a young age💜💜💜
Awe, thank you! ❤️ I did have to learn to adjust my life a little differently but it is really a difficult disease at any age. We are all warriors bonded in this journey. Thank you for watching and your comment. Hugs!
Great story, thank you. I believe I'm about to begin that journey.
Thank you for sharing. You caught my attention when you said, sore throat. That was my first indication something was wrong. Then shoulder pain, wrist and hand and knee pain. Long story short I was dx with UCTD which is short for undifferentiated connective tissue disease.
It’s awful. Was on plaquenil which caused terrible side effects. I’m on nothing because my rheumatologist offers me no other options.
Searching for answers.
Thank you for sharing. This is invaluable information about early symptoms that are not always classic or well-known symptoms of RA. My mom and paternal grandmother have RA. I have other autoimmune diseases (celiac, Hashimoto’s, autoimmune gastritis), but am suspecting that I might also develop RA. I wish you well.
Hi Beth! Autoimmune diseases do always seem to love to come in multiples. You have a lot on your plate so hopefully RA stays at bay but it sounds like you know your family history. I hope your mom and grandmother are stable and have found treatment that helps. I’m sending good vibes your way! Thank you for your comment! ❤️
Oh wow I have all the symptoms. My neck hurts my hands. My thumbs are not in a good shape. Some thing is coming out my knees to everything hurts. I cannot sit I cannot stand properly that’s me thank you very very much. God bless you. You open my eyes I have to run to my doctor to do some bloodwork and see the specialist, thank you and God bless
I’m so sorry you haven’t been feeling well and are in a lot of pain. It’s such an exhausting way to live. I hope you are able to discuss it with your doctor soon and I’m sending good vibes your way that they are able to help. Hugs! ❤️
Your symtpoms are a carbon copy of what I've been through, being tired, sore throat, rashes, hands and wrists hurting and so on and so on. I tried different shoes, wrist bands, heat pads, tylenol, etc. At first with me it was my wrists and hands. I do alot of work with my hands and was sure it was carpel tunnel. I was tested for that but it was negative. Went to a podiatrist and was told to wear arch supports. I spent more money on different arch supports and it did not help. Sometimes I couldn't brush my teeth or wash my hair. Finally, my primary Dr. said I should see a rheumatologist. I was finally diagnosed with RA. Still having problems and recently had my knee replaced. It's no fun but you push on and hope for the best.
It true…we do learn to push on. I’m sorry it took you so long to be diagnosed. I hope your Rheumatologist is able to help. I’m sending you extra strength. Thank you for sharing your story with me. Hugs, Warrior! ❤️
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Thx for sharing. It helps me to understand more about RA.
Glad it was helpful! Thank you for watching and commenting! ❤️
This sounds so much like my story. I will be seeing the rheumatologist in November finally.
I’m sorry I’m late to reply. Hopefully the Rheumatologist was/is able to help. I’m sending good vibes your way. I know the diagnosis journey can feel so discouraging at times. Thank you for your comment! Hugs! ❤️
I just was told I have RA after months of frustration and being told it was stress or planters fasciitis. I see the rheumatologist in 2 days. It’s been a journey for sure.
It’s so frustrating that so many of us are dismissed in the beginning, our symptoms often blamed on stress. I’m sorry you experienced that too. I hope your appointment with the rheumatologist went well and you were able to find some answers and treatment options. I’m sending you extra strength. Hugs, Warrior! ❤️
I'm 49 and just now getting tested for RA. But just like you, I've been having symptoms since I was 30. My hips and knees are always in pain. Doctors just kept sending me to physical therapy. The therapists essentially said I was just lazy and needed to exercise more. One said, "I've never seen a person your age with a hip locked up so bad", but not concerned. I even had seen a specialist for my knees, got x rays and she said, oh it's just mild arthritis, non specific, no big deal, and gave me fluid injections which did absolutely nothing. I had two physical therapists that thought I also had fibromyalgia. But my doctor refused to talk to me about it when I made an appointment specifically to address it and sent me back to PT for SI joint dysfunction. That therapist told me that the joint doesn't move and there is no such thing. Finally now my hands are being affected and I am very weak all of a sudden. I can't climb stairs, or wring out a washcloth . I have a new doctor who just ordered lab work and X-rays for me.
Long story short....if your a woman, especially one with a weight problem, expect medical gaslighting to be the norm.
Oh gosh, I’m so sorry for the lack of care in your journey. You are absolutely right about medical gaslighting. I too experienced it from a GP doctor who told me I was just stressed. I truly hope you find an amazing rheumatologist who helps you find stability! Thank you for sharing your journey with me. Hugs, Warrior! ❤️
Thank you for your story
Thank you for watching and your comment! ❤️
My mom has RA and Psoriatic arthritis and the last couple of months I’ve started feeling the symptoms. I got to my PCP tomorrow so I’m gonna mention it. There was one day a couple weeks ago where it took me forever to get out of bed cause the pain was so bad.
I am so upset. for 4 months I started having these symptoms. One of my friends told me it might an autoimmune disease. I'm going to the doctor next week. I am scared and upset. I'm only 28...😔 I've had a stressful life since childhood. I think it took the best of me.
How to help a friend with Ra ? Just be supportive ??
Thanks for sharing ! My CRP is 12 and Sed rate was 50 , I have a sore throat that comes and goes mostly comes and will not go a way . I feel so bad previous to this I had horrible joint pain in feet , ankles and hand , shoulders . I found out b12 , vit D and iron low so I received infusions and supplements for the b12 and vit d . Doc sending lab work for Ana and other to check for RA. I was wondering did the sore throat go away ? I’m miserable and at my wits end . Also do you remember how long you had the sore throat before other symptoms started ? Thanks for your time
THANK YOU SO MUCH!!! OMGoodness, I have all the symptoms you mentioned and probably the ones up haven't mentioned as well, and my doctor can't find out on my blood test, no matter what she did. I must be the SERONEGATIVE RA - it's not showing, even though I have all the symptoms. I've been suffering and my doctor wasn't I are perplexed. it's not showing. After you have explained that youb have the SEROPOSITIVE RA, I went to see if I could be the opposite, and I am!!! Thank you so very much, I now will send her this, I found on the internet, explaining our dilemma 🙏🙏🙏 ⬇️
Seronegative RA
Being seronegative means you don't have the anti-CCPs in your blood at all -- or you don't have much of them. If you still have RA symptoms and a negative test for anti-CCPs, then you probably have seronegative RA.
Oh, I’m so glad you found answers and I’m glad my story could help a little. Thank you for sharing your journey with me. I have such respect for Seronegative warriors because it is such a difficult road to diagnosis as it isn’t as straight forward. I’m sending good vibes and prayers your way that your doctor can help you now find a road to less pain and stability. Hugs, Warrior! ❤️
Well, you just described what I'm going through. Wake up call. I was told I had tested super positive in my blood work. But then I got pulled off all the meds that were agitating it. This is hard.
Thank you for sharing your story, I can relate to it a lot. I'll definitely check out your other videos, especially the clip you mentioned in this video.
I'm 4½ years into my journey, and I still don't have a diagnosis, which is maddening to say the least. I think the main reason why I haven't gotten any answers is that my journey started with unusual symptoms. Shortness of breath was my first thing and I remember looking into RA and thinking "nah, that's not it". But as time has gone by, I have gotten more and more symptoms that have made me reexamine the possibility. I'm going to discuss things with my doctor tomorrow, and hopefully get things moving towards answers. I know auto-immune diseases are very similar in many ways, but my grandmother had RA, which makes it a likely candidate to me. Anyway thank you again for sharing how things started for you.
Oh man, I’m so sorry for the road you have found yourself on. Not feeling well and fighting for answers is so exhausting. I totally understand! I am sending good vibes your way that a good and knowledgeable doctor finds their way into your journey. You aren’t wrong for wanting answers especially since autoimmune disease runs in your family. If you are near a teaching hospital, I would highly recommend a visit with a Rheumatologist there. I’ve always found that teaching hospitals are better at seeing the whole picture. I’m glad my story could help. Hugs, Warrior! ❤️
@@ElainesAutoimmuneAdventure Oh yes, it's frustrating to say the least, especially during the times you don't feel well. When things are going okay, you can let yourself forget, take your meds each day and just soldier on, but this last month has been horrible. I talked to my doctor and I didn't even hade to ask him to consult with the rheumatology dpt, which was a relief in itself. After four years of no answers I feel like a crazy person whenever I suggest things to him because it has never lead anywhere. But I feel a little more hopeful now, though I've been getting "no that test is normal too" so many times, I almost don't dare to hope anymore. My doctor let me increase my steroid dosage though, so now I'm feeling much better. It always amazes me how fast it works on me.
I'm half american, but I live in one of the largest cities of Sweden, I don't know if the hospital here is the equivalent of a teaching hospital, but it's fairly large and I have mostly good experiences of the people there.
Hugs to you too
I'm 18 year old Yi I'm suffering from arthritis 😷 5year. Hello my hand finger not working even my knees I have so pain so so pain I am😢
I hope you are going along ok. I really appreciate you telling your story. I am starting to wonder if l have RA. Thank you.
I’m glad my story could help! I’m sorry you have found yourself on this road. I hope you find a good doctor to help you. Sending you extra strength! Hugs! ❤️
Great video
Exactly what I'm going through 😢 not diagnosed yet,rheumatologist app in 6 months
I’m so sorry that you are suffering. And I’m so sorry that there is such a long wait for the Rheumatologist. I totally remember that wait during the beginning of my journey and I know it feels so discouraging. I’m sending good vibes that your primary care doctor can help you with a little bit of relief during this time. I’m also sending prayers your way. Hugs, Warrior! ❤️
When I first experienced the roaming pain from one join to another I got scared. More symptoms were following each other gradually but that time all my blood test were negative apart from accp as I didn't pay for it, only ESR jumped from 2 up to 10, I sensed that was RA, but having all symptoms I went to India from Russia and most of them disappeared without treatment, I could enjoy my life though there were bad days but not with clear symptoms as join pain but strange ones. Anyway I was kind of OK till I got stressed out severely in the relationship and didn't release it on time,then I experienced the hell since then I m still managing. Of course berter buy still the knees and wrist are swollen, but better, even I m on bio generic med plus basic... Well it is easier to tackle disease in the beginning even trying some diet, exercise, stress management.... As we get in a loop being scared of symptoms and future so the desease gets even stronger from this... How are you these days?
Thanks for sharing, I am having the same issue, pain in the neck, swelling in both feet and the red rash like strawberry patches on the foot, on the front of the lower leg and the back of the knee, so I am getting my blood work done to rule out RA for my Rheumatologist, I do have OA Arthritis just hope I don’t have RA on top of that….
On no, I’m so sorry you are struggling. Arthritic issues are certainly not easy. I’m sending good vibes your way that your tests show how your Rheumatologist can help you find less pain, easier mobility and stability. I know the thought of overlapping issues can be overwhelming. Hamg in there! Hugs, Warrior! ❤️
Just got the diagnosis last week. I’m just really scared and worried.
I’m sorry you’ve found yourself on this path but you definitely aren’t alone. Diagnosis is hard and finding a new normal can feel overwhelming but you’ll find yourself. Take time to grieve. There are many great treatments that can provide stability. I’m rooting for you! I’m also sending you good vibes, positive thoughts and prayers! I hope you are able to start treatment soon. Hugs, Warrior! ❤️
I was diagnosed with Rheumatoid Arthritis. My ankles swollen, painful bunion, painful bone spurs, and left arm and hand has stiffness. My doctor prescribed me methotrexate. Is it a good medication to use?
First, thank you for your story. I do have RA is horrible pain in my hands now my neck. If you can possibly contact me in private with me will like to know more details how to survive this without giving in to the pain.
My best advice is to find a Rheumatologist who listens to your concerns and allows you to be a team member in your care. If you aren’t finding that a second opinion may be needed. There have been many advances in RA treatment and precision medicine. I find treatment of my RA helps with the pain (medications and injections). When I flare or am having a bad day, I rest. I am sending good vibes and prayers you find good care and pain relief soon. ❤️ I’m on Instagram, if you want to message me there.
Yes I know the feeling of can’t don’t the little things cause it hurts like brushing my teeth or turning a door knob. I walking a short distance because every bone in my feed hurt or hips hurt.
I have ANA+ arthritis, I was just diagnosed with Psoriatic Arthritis last year. I had the same experience with my feet, all of the bones/joints it my feet hurt. My joints have been swelling for 7 years. I have had a dx of UCTD, high ANA since I was 32 (I’m 44), and I knew that I actually had PsA (mom has it) but doctors wouldn’t diagnose it because my inflammatory markers are normal. I have an immune deficiency (low IgA), Hashimoto’s for 33 years, and pernicious anemia (very very low b12 and iron). I think that IgA deficiency and anemia can cause inflammatory markets to seem low. Idk. Anyway I’m on Humira and meds for Raynaud’s but still have flares, but overall it’s more manageable.
10:11
Thank you for sharing your journey with me. ❤️ I too have pernicious anemia and Primary Immune Deficiency so I totally understand the compounded issues you are facing. it’s not an easy journey. I’m glad Humira is helping! it’s always a relief to find something that offers a bit of stability. I’m sending you good vibes! Hugs, Warrior!
Thank you. Very valuable.
I’m glad you found it helpful! Thank you for watching and for your comment! ❤️
Thank you for sharing.
Happy to help! 🥰
Thank you for sharing your story. I need some advice. I have been suspicious for a long time that I have RA. I saw a rheumatologist but she said unless I was in a flare up she wouldn’t be able to tell me if I have it. I get so sick during a flare up that I wouldn’t even be able to go in if I wanted to. I have been dealing with extreme fatigue and pain in my feet when I first get out of bed or swollen hands when I wake up. Then I started getting knee pain that is so bad I can’t walk. Then I got an extremely sore wrist and couldn’t open anything like a medicine bottle. I don’t know what to do anymore because I’ve been to so many different doctors (not only for this) but I am burnt out on going to any doctors. Any advice would be greatly appreciated!
Wow?!? Exactly my story?!?! Going trough doctor after doctor and my bloodwork is jumping but we can see swelling in joints, rashes , red blood cells in urine etc….. really hoping my dr can help me next apt
I’m so sorry you are loving through this. I know it’s exhausting. I hope your doctor can help at your next appointment too! If you haven’t seen a Rheumatologist yet, I totally recommend it. I’m sending you good vibes! Keep me updated! Hugs, Warrior! ❤️
@@ElainesAutoimmuneAdventure thank you ❤ still fighting… 😅
Thanks for sharing!
Thank you for watching! ❤️
I had the same symptoms and mine was to cut out wheat and all cereals, all processed foods. go with a high protein diet, and none of that low fat food diet so pushed on people.
Very helpful I really understand you ❤
Thank you! I’m glad you are here! ❤️
My wrists hurt then it went away by itself and has not been around more than a year . I think I need to check
Thank you for sharing! I'm sure your story will help so many. I'm trying to figure our what's going on with me. I have some unexplained musclel/ligament pain/soreness and trying to determine the next step. Would you suggest having your GP order the initial blood tests to determine whether one has RA, or is that test not sufficient and perhaps I should go straight to a Rheumaoid doc? Wishing you the best. I will look forward to hear how it is that your are managing. What your diet, Rx, supplement and regimen is that is working for you. ~Best
I’m so sorry you have found yourself on a chronic illness journey. If you have a primary care / GP doctor who will run autoimmune disease and inflammation blood panels for you, that’s probably not a bad place to start. Most Rheumatologists will run their own blood work and additional panels when you see them for the first time so if your insurance allows you to start with a Rheumatologist that’s probably not a bad start either. It really just depends on your insurance. I am sending lots of good thoughts and vibes your way that you find a doctor who can help you figure out a road to stability soon. ❤️
Im going through all this. But my shoulder and hips are hurting. My voice does go in and out.
Omg im in the middle of getting diagnosed every single thing youre mentioning im experiencing. rf high, ana high positive & abnormal, c protein high, rbc low, it all sucks. Im 40... The sore throat 100% real! Did throat pain eventually go away? It hurts my ears sometimes... & Weakness i cant open nothing... Mild fever too on & off. Dropped 27 pounds in 2 momths hard for me to eat...
I'm just tired of the pain
I’m so sorry. I know RA is very painful. I hope you have a Rheumatologist who helps and I hope you find medications that give you more pain-free days over painful ones. ❤️ Thank you for sharing with me. Sending you extra strength!
Took ten years to get my diagnosis after so many wrong ones. Started with tick bites to fibo. Was so stressed just keep giving me antibiotics and steroids
Thanks for sharing. How do you manage it? Does someone have to eat low inflammation foods ?
Thank you for your great videos. They’re very informative and helpful. I’m in the early phase. Have been having swelling and pain for a couple of months. Just got my RA factor and it is 650. I know that’s high but can’t find info as to if this is over the top high - dangerously high. What was your score in the beginning, if you remember. I’m being referred to a rheumatologist.
I’m sorry for your recent diagnosis but glad my videos can help a little. I honestly don’t remember my Rheumatoid Factor or Anti CCP results at diagnosis. They are still positive but have gone down with treatment. The thing about blood results with autoimmune disease is that it is just a matter of seropositive or seronegative. Someone can still have a serious case of RA without it showing up in the blood. A Rheumatologist is a great resource. I’m sending good vibes for your appointment. Be sure to ask questions ( it isn’t frowned upon). I’m sending extra strength your way. Hugs, Warrior! ❤️
@@ElainesAutoimmuneAdventure thank you so much for your reply and encouraging words. I have so much going through my head right now, and much deals with treatment options. They all sound quite frightening (side effects possibilities). I have been in remission from NH Lymphoma for 5 years and went through 6 rounds of RCHOP chemo. The thought of potentially living with similar side effects to those drugs is unsettling. I’ve totally revamped my diet - gluten free, low carb, no dairy - hoping that helps. Thanks for allowing me to ramble. ☺️
I did watch all of this but I would recommend a keto diet and improve gut health. Lots of states are showing good results
Thank you for your comment. I have family members who adhere to a keto diet and they have improved their health with it but it is not a diet that works for me. I do agree that diet is a part of overall health and in conjunction with medication can help. Thank you again for your comment and watching. ❤️
Hoping you are doing well. I do have some questions for you. I have chrons and have been disnosed with arthritis . For the last couple of years i have become more and more disabled. I am helping to raise three grandbabies and lost my youngest daughter in 2019. However i would like to ask you if you have the problems i am having. I am in tons of pain and the other thing is i can hardly get out of the house. Morning are heck i can hardly walk.. i can't complete tasks most folks take for granted. I have to stop and rest in the mist of doing everyday tasks. Is this what happened with you?. Thank you for listening. Prayers for you.
I apologize for my late reply. First, I’m so sorry for your loss. I can’t imagine the grief a parent feels with the loss of a child. Extra love and strength to you! Your grandbabies are so lucky to have you and your love!!! What you are describing is the fatigue I feel. Absolutely yes! I do have to rest a lot in daily life. I see a gastroenterologist for my GI disease but I see a Rheumatologist to help my arthritis and systemic issues (the other stuff). My doctors work together. If you haven’t seen a Rheumatologist yet, I would suggest asking your gastroenterologist if they have one they work with and perhaps they can refer you. It’s worth the consult in my opinion. Hope that helps a bit. Again, I’m sending you extra prayers and strength! Hugs! ❤️
🙏❤️👍
Unless your fingers are all crooked, it may not be an RA. Pain could have been peripheral neuropathy due to lack of B-vitamins. Your initial sore throat could have been lack of B2-B3, aka pellagra. (Check if your heels are also cracked).
Recently igot pain in my left leg when I lay down, for no reason at all. The pain started increasing, became unbearable in a minute or two. The only solution was a sublingual 5000 mcg (Kirkland B12) that cured the pain in a minute. I'm 66 and the intrinsic factor (stomach protein that absorbs B12 from food) may no longer work, so sublingual delivery is the only effective means.
Another thing that can help alleviate joint and nerve pains is Krill oil. It provides phospholipids that form myelin sheath around the axons of nerve cells, cushioning abrasion and pain. Try taking 2-3 softgels that give 1-2grans of phospholipids daily and see improvement in pain in a few days.
Thank you for your comment. I’m a seropositive RA patient with positive imaging so my diagnosis is in fact the correct one for me and my journey. I appreciate your insight though. I totally agree with you on B12 as I’ve taken prescribed B12 shots for over 26 years due to malabsorption diagnosed long before my RA journey. and yep a lack of B12 can totally make you feel terrible. To this day, I can always tell if my B12 is trending down. For any other warriors reading this comment, please remember to speak to your doctor about any supplements as a lot of supplements and over the counter medications can interfere with prescribed medications. Most doctors and Rheumatologists will gladly have that conversation with you!
urgh : ( sorry what a messed up period of time. RA I am going in on Monday to be tested hopefully. It's a new doctor. I am dreading this. My knees ache like hell, my neck has hurt for a long long time so not sure if it's related. The thing that is making me think RA is my fingers. At night my fingers swell up I am guessing and it leads to a few fingers on the left hand from being unable to close or grasp. By mid day they have improved. Right hand the thumb joint has hurt for about a year, sometimes more than other times and again difficulty bending. I also have nausea and dizzy feeling off and on. QUESTION: what medications have worked for you best? Do you feel stress makes you flare? I have started meditation hoping that will help.
Dude the foot pain is ungodly.
It is! I broke my foot recently and honestly had no idea I broke it because it hurt just as much as RA foot pain. You speak the truth!
I had my first auto immune illness in 2018 finally got the actual diagnosis of it in 2019 graves disease (thyrotoxicosis) my antibodies were really high, I'd been attacking my thyroid for around a year and my doctor just couldn't Diagnose me😠 he just kept saying it was my menupausal state 😢
I lost my thyroid in 2019 it was really toxic couldn't be saved.
I've never felt right since thyroidectomy😢 and none of my symptoms have gone, especially the bone pain in my hips, knees, ankles, wrists shoulder's, I always have a dry sore throat, my surgeon assured me all symptoms would go after thyroidectomy, I looked into illnesses I had before my thyroid went nuts.. In 2004 I was diagnosed with primary hyperparathyroidism but just left (watch and wait) then in 2015 I was rushed to hospital vomiting blood and passing blood from my back passage, after 12 days gastro diagnosed colitis, then in 2018/19 I get the graves diagnosis.
I've had scans in 2020 which showed ostiopeania and ostio arthritis, but no RA which shocked me as I was sure that was why I had all this pain, I know when I'm in a bad flare up as I can barely move, I feel like my bones are like cement I cry with the pain, also I have what I can only describe as a temperature rise in that I become unbelievably hot and sweat buckets, I have just recently started with new symptoms.. Like my bones are vibrating it starts at the pubic bone runs down my thigh bones, and into my ankles it's such an awful feeling I become very weak until it passes.
And to put the cherry on top of the cake I get diagnosed with primary hyperparathyroidism AGAIN 🤦♀️ this time I've taken charge of this myself as my gp and endocrinologists just don't want to do anything, a private parathyroid surgeon as identified a nodule in my neck, waiting on a chlorine pet scan👍
But I'm sure I also have an auto immune problem to😢
I’m so sorry for the journey you’ve had to endure. I know it is so very exhausting and so exhausting to have to continue to advocate for yourself year after year. If you haven’t yet and have an opportunity I would suggest seeing a Rheumatologist. They really know how to look for autoimmune disease. I know the wait to get in with them is sometimes very long. Thank you for sharing your story with me. I’m sending extra strength, prayers and good vibes your way. Hugs, Warrior! ❤️
Karen, what you went through and are going through is unbelievable!! It’s so hard to get the right diagnosis and in the meantime who feels like going to all these dr appt and waiting for results! That in itself is a challenge! I feel so bad for you and all of us on this site looking for answers! Everything is an autoimmune disease, what is up with that? Our bodies are fighting something so should maybe we lower our immune system? If that happens it leaves us open to not being able to fight off anything! 🙆♀️
I made the mistake of wearing shoes a size bigger because my feet hurt so much it was only 5 years later I bought the correct size Skechers and was able to walk a lot better, wish my rheumy had told me this from the start
I love Sketchers! I just introduced Go Walk Sketchers to my mom and she is loving them too. I’m sorry you struggled so long with finding good tools for your feet. Thank you for sharing your story with me. Hugs, Warrior! ❤️
I’m probably seronegative with high c reactive and ESR but negative RA factors. I’ve been experiencing pain in both of my arms, shoulders and a bit on the knees. I’m just starting to see a RA doctor. She puts me on Prednisolone to see if the pain could subside, to see if I’m a seronegative patient. Can I have a baby if I’m diagnosed with RA? I’m already 36 this year 😢
Sounds like you have a good doctor helping you, I hope they are able to help you find less painful days. I’m sending you extra strength. I’d encourage you to speak with your doctor about pregnancy. There are certain medications you can’t use during pregnancy but there are some you can use. Your doctor will help guide your path. Hugs! ❤️
Hello I’m 35 and I started with upper rib and arm and leg pain, I went and received meds for what he thought was RA until my results come back , my RF was 14.9 and so he referred me to a rheumatologist and he send me to do a bunch of blood work and currently waiting on results . My fingers really ache but I have no swelling or nothings just pain , I did tell him I heifer from bad anxiety and stress and he thinks that might be a huge factor but the wait is really getting the me , what do you recommend to take meanwhile for pain , he couldn’t prescribe me anything until I see him again for 3 weeks and that seems like forever
Hi Joe! I’m so sorry you are suffering. The diagnosis journey can be a long process and the waiting is almost the worse part. I know most Rheumatologists take a while to get into. During my 2 month wait to get into the Rheumatologist in the beginning, I wasn’t given anything for pain either. I would recommend talking to your doctor about over the counter stuff you could use while you are waiting for your Rheumatology appointment. Everyone’s underlying health issues are so different. I used store bought braces and supports (knee braces, ankle braces, wrist supports) and used warm baths during my wait(although I couldn’t get out of the bath myself so make sure someone is around to help you). I also used ice packs and rest. I know that doesn’t seem like much but it does help while you are waiting. Once you are into the Rheumatologist they should be able to give you good advice for self care and pain relief. I’m sending good vibes your way! ❤️
How much better do you get from vitamin D and potassium?
What kind of treatment / management are you on?
Is there a medication that helps?
Thank you...!
Can it causes tremors and numbness ?
I just noticed a lump on my left foot thr other day. And it was a ganglion cyst...is that a predictor of having RA??
I don’t believe so. I don’t know much about ganglion cysts, I’ve never had one. You probably want to ask your doctor.
I just found out I have and I'll be 30 next month
I’m so sorry. I know how scary the diagnosis feels but there have been many improvements in medication and precision medicine. I’m so glad you found my channel. You aren’t alone. I’m sending good vibes that you find a great rheumatologist and stability soon! Hugs, Warrior! ❤️
Is coverage the reason why some doctors take long? Plus, was your neck pain caused by stiffness?
There is a shortage of Rheumatologists so that is what causes the delay in getting in. My neck pain was RA inflammation, with treatment it has significantly improved. Hope that helps! ❤️
@@ElainesAutoimmuneAdventure
Thank you from Honolulu
I tell my doc all this stuff but I have no RF factor but every single symptom- fml I’m over it
I’m so sorry you are suffering. If you haven’t seen a Rheumatologist yet, I would push to see one. They are experienced with seronegative RA (meaning it doesn’t show up in the blood). You can ask your Primary Care Doctor for a referral. The wait might be a bit to get in but it is definitely worth the wait. I’m sending you good vibes and positive thoughts! Hugs, Warrior! ❤️
@@ElainesAutoimmuneAdventure working on it. Going to see if a loooong vacation resets my brain from a series
Of traumatic events the last four years. Everything got worse since both my
Parents died, we lost our jobs and moved out state. Sigh.
Were you able to keep working? Or did you have to file SSDI? I have a desk job and only able to still do it because I have a dr’s letter to work from home. I know it’s getting time but am worried about having Ins for dr’s and meds. I’ve heard you don’t get Medicare for 2 more years once approved disabled. Just do t want to put our family in a bind financially.
I totally relate. I am still working full time. I’m also not in a position that I am able to give up my income and medical insurance either. I have had to take 3 leaves of absences thus far during the course of my RA journey though. I was lucky to be with my employer before my diagnosis so I do have intermittent FMLA that I currently use when I need it. My job is a desk job as well.
I’ve recently been diagnosed with Poly RA. Just over 3 months ago. On Prednisolone I just about manage but it looks like I have osteoporosis too so prednisolone isn’t good for me. I started Hydroxychloriquin and Salzapirin two months back but have still needed the taper of prednisolone. Now I’m down to 5mg of prednisolone daily my body is seizing up badly again. I need a bit of hope. Do you think the 2 new meds will kick in soon? I have no help at home so it’s soooo hard. One leg, knee and ankle are very bad and my shoulders and wrists start to seize up. X
I’m so sorry to hear that you are suffering. I really hope your new meds help you soon. I’d ask your doctor how long they think the medicine will take to feel full effects. I’ve asked my doctor that question before and found that some medications take at least 3 months to feel full relief from but I am unfamiliar with your medications so I’m really not sure. Definitely ask your doctor. I’m sending you good vibes, extra strength and prayers your way! I hope you find some stability soon. Hugs, Warrior! ❤️
I'm waiting its in my bloods but I'm in so much pain 4 month waiting list
I’m so sorry you are suffering and having to wait so long to see a Rheumatologist. Hopefully your primary care is able to give you something to help you in the meantime. Hang in there warrior! There are many of here who know your shoes. I’m sending good vibes and positive thoughts your way! Hugs! ❤️
Thank you I'm so sick off it
Ma'am I am also having rheumatoid arthritis, how Did u made it ma'am to get heald, from Philippines
I’m so sorry you have found yourself on this path as well. For me, I am under the care of a Rheumatologist and take DMARDs and biologics (prescription medication) for treatment. Hopefully you are able to see a Rheumatologist for care. I’m sending lots of strength and prayers your way! Hugs, Warrior! ❤️
hello I,M Arthur i have been having stiff knees on and off for probably 10 years but usually after i get up and moving sometimes the pain is worst than others it changes i never took nothing for it now ten years later they still bother me at different levels but for the last two years my right forearm goes numb like i lifted weights to long it did not always happen i have had pain in my left shoulder can barely lift it at times then it went to my other shoulder it seems it likes to flare up it has now started in my hands then knees shoulders and my hips and hands my flesh feels hot at times i have been taking a supplement that helps some when i was discharged from the military my lower lumber was damaged also my neck the pain at times is horrible but i have not been diagnosed as of yet they did tell me i had osteoarthritis it is in lower and upper neck they say it is incurable but we will see i wanted to know if you take any kind of supplements that help. thank you
Hi Arthur! Thanks for sharing your story with me and for your military service. I’m so sorry you’ve been having pain and mobility issues for so long. I know it gets so discouraging. If you are able to, I would encourage you to ask your doctor for a referral to a Rheumatologist. Sometimes it’s a long wait to see one but I totally think they are worth the wait. If you are already seeing a Rheumatologist , I would encourage you to speak with them about the progressing issues you are experiencing. I do not take any supplements that aren’t prescribed by my Rheumatologist as some of the meds I’m on are negatively impacted by supplements. I’m sending good vibes and strength your way! ❤️
Her hands are fine
I assume you mean my hands. They aren’t particularly “fine”. I’ve had injections. But, with new DMARDs and biologics the joint destruction once seen in RA patients is a thing of the past. I started methotrexate and anti-TNF inhibitors within months of my RA diagnosis. That saved my joints from major destruction. Hope that helps clarify things.
Can you walk?
What did your rheumatologist put you on for meds ?
The first medication I was treated with for RA was methotrexate. We then added a biologic to methotrexate. ❤️
@@ElainesAutoimmuneAdventurewhat is the name of you bio generic medicine? Is it really helpful?
Do you work?
Hi Lize! Yes, I do work. I’ve had to take 3 leaves of absences from my work though during my journey. Also, I have intermittent FMLA I use during the year. My job is a desk job so it is a bit less physically demanding. Working is hard some days. ❤️
Is your RA got cured now
Unfortunately autoimmune disease cannot be cured. It can be controlled or go into remission. My RA is stabilized with medication. It isn’t a perfect solution but has added some of my quality of life back. ❤️
4 years of symptoms w/o diagnosis random referrals tests medications and even today a recovery doct prescribed tens and other electric phisyo stuff for my spine even though its my joints ( did have spine issues in past maybe related) w/o doing blood work to see how i fare
clown medical world
I’m so sorry you are struggling. I have also been dismissed by doctors and it is so so frustrating. I found the best help at a teaching hospital. I do have to travel there. If you have a teaching hospital near you (even if it is a bit of a drive) I’d highly recommend you try the rheumatologists there. I had to ditch my first rheumatologist to find better care. I’m sending good vibes your way! Thank you for sharing your story with me! Hugs! ❤️
Hello maam i want to talk to you about this
Hi! If you have any questions, feel free to leave them here! 🙂
Actually I am 28 year's old .
My ASO titer is positive .my joints suffer from it . Kindly tell me about how it recover
Can you describe what your rashes looked like.
My rashes resembled hives or like an allergy, sometimes it looked like scratches. Actually, at the beginning of my journey I was sent to an allergist for allergy testing. Hope that helps! ❤️
Is video ko Hindi me batao please reply
I’m sorry I’m only an English speaker. I don’t understand. ❤️
Whoa whoa whoa... Youre 44?!
🥰 Well actually, I’m 46 now. 😁
@@ElainesAutoimmuneAdventure Unbelievable. You look like 26.
such a brave and courageous lady, thanks so much for sharing your story. it really does help others ❤ 🤍
I’m so honored to be able to raise awareness for so many brave Warriors! It’s not an easy journey and autoimmune disease patients have extra amounts of strength. I’m happy it helps! Thank you for your comment! ❤️