So sorry for your suffering. I can identify with your sleeping issues. It definitely wears on you to not sleep while dealing with such pain! I pray for everyone dealing with such suffering. No one should endure this type of suffering. I have my days where I question if life will be bearable for years to come, living in pain. God bless you! 🙏🙏. You’re in my prayers.
Thank you so much for your kind words and empathy- yes the sleeping issues mixed with a severe flare are horrendous. Then the pain never ends … it can push us into very dark exhausted places. I am thankful my doctors are willing to help with medication. Thankfully I haven’t flared again since that time in January/ February 2021 so my sleep has been better. That helps. It took about a month or so after the flare the regulate back again partly due to steroids and partly due to the ‘fight or flight’ response our body develops.. I try not to think too much about the future. For now I have remained in a more stable manageable place. But it hasn’t always been like that so I really do feel others pain who feel like the really hard times just go on and on. I have lots of daily symptoms and pain but nothing like the intensity in those videos. Thank you again for your thoughts and prayers - may you too find more strength, peace and healing. Xx
@@beckyhillblog I’m glad you haven’t had flares since then. Everyone needs a reprieve from pain and the mental stress it causes. I’ve lived in pain or discomfort since ‘04, but not from Arachnoiditis. This is new. I’ve had brain surgery from a large cyst, kidney surgery for same reason;removed cyst and part of the kidney), gallbladder surgery, four eye surgeries due to a shunt I have for my brain cyst, over draining and caused my brain to fall (drop), and my eye droop. Those surgeries caused corneal neuralgia which is a horrific pain to live with in the eye. A hysterectomy in ‘18, then developed an infection shortly after. It was untreated for long enough it developed into pelvic inflammatory disease which began a series of events. The PID caused my body to attack itself, adhesions spawned throughout the abdomen….everywhere, including 6 partial bowel obstructions. It took drs forever to agree to go in and do something. It took 3 hours to operate and even had ascities or fluid in the abdomen that was full of inflammatory cells. This whole thing, attacked my spine and caused my Arachnoiditis. I had pelvic surgery just three months after the abdominal adhesions surgery, followed by two procedures to remove two large kidney stones. It’s been a life of struggles and pain but I’ve kept going for my kids. Two boys, that are grown and my youngest in the Navy, keep me here. I’m divorced and living with my disabled mother, so my future does worry me. There’s no other family around and I feel myself deteriorating in mobility, pain increased, and mentally dealing. But one day at a time is all we can do. God bless you and thank you for documenting your experience. It’s been helpful to me.
@@Langolin1998 I am so sorry to hear about your very difficult, long and complex journey of so many diagnosis that also lead to arachnoiditis. Wow it must have been so hard to work out what was going on half the time… and so discouraging when problems and pain never end and seem to somewhat multiply. We have to find ways to live and have key things to keep living for on the days when life is just so impaired by darkness and pain. I am learning to be better at not dwelling on the future. But this doesn’t mean I am not also realistic. But in the end - none of us really know what tomorrow will bring. We can only do our best today, as you said, and hope for strength to face tomorrow- and the challenges that will inevitably come. I pray you will have the strength, wisdom and deep love for those around you that will keep you centred as you face the rollercoaster these conditions can bring. Take care & thanks again for taking the time to share your story!
@@beckyhillblog thank you. And beautifully said….staying focused and for me, even more focused on prayer for strength and encouragement. I look forward to seeing more of your videos for learning and coping. Hope you have a good day! 😊
I never wanted to be on pain medication, but if you can find a doctor to give you anything that will help, please take it. The pain you are in warrants medication. I have had adhesive Arachnoditis for a long time. I wish I started pain medication sooner than I did. No one deserves to feel like you do.
I also have adhesive arachnoiditis, and truly the only thing that helps my pain is pain medication… And there is no shame in that, but doctors and pharmacies have tried to make us look like druggies (more like the CDC and DEA, which the doctors and pharmacies are taking to the extreme) I get enough pain medication to make a positive difference right now, but I know at any day that this could end, due to this miss-guided war on drugs
Thank you for taking the time to leave such a thoughtful and empathetic comment. I am so sorry you have had to face this level of pain for years. When I am that bad I have to take oral steroids, anti-inflammatories and pregabalin on top of my normal LDN dose. Although in reality it hardly seems to touch those levels of pain. For me it's only the IV methylprednisolone that really stops and reverses those pain levels.
@@timgreen1835 I am so sorry that people face such a battle to get pain medication. Only those who have NEVER felt THAT MUCH PAIN could really stop people being treated for that pain. For myself - I have never got on with opiates anyway. They never worked for me and I had too many other side effects so I could never tolerate them. But that means I can now take the LDN which did seem to help me come off the pregabalin longer term - although I still need it for the flares. Although really I think it's my combination of other anti-inflammatory meds - prednisolone and diclofenac (& omeprazole to protect my stomach) that really controls the pain and prevents further damage.
When I get a flare up like that, I find it helps me if I Rock my body from side to side. It foes not reduce the pain but it gives you something else to concentrate on. I also fund if I lay with my legs outstretched and force them to stay straight so my leg muses are tensed, I dint feel the pain in the legs so much..it is just the worse pain ever..mine is from the mostly removal of a 3.5 inch arachnoid cyst. The parts ghat were earapped tightly round the spinal cord were in surgeons words, mashed and destroyed as much as possible...but several years later its regrow, because of scar tissue it cannot be te operated on, it has now pushed my coccyx out of shape and go one dude so it's like sitting on a ( my description) tennis ball. I have a flare right now, I have not slept the pain will not let me, I find the quickest way to get it to settle us to stay in bed laying flat, or on my side, but not curled up just straight out...your descriptions of pain suffered is same as mine. Am going to play this to my doctor so she will know I am not talking strange Because that's how she looks at me, as if I am telling stories...I am do sorry you are suffering too, but I am hlad I have found you on here
Thank you for sharing some of your story and I am sorry to hear about your ongoing pain and suffering. We all find our unique ways to cope - but we can equally learn stuff from one another too. I am glad my video has helped you - I hope you find more relief and symptom management moving forward. With empathy and love, Becky x
@@beckyhillblog thank you so much for reading and taking the time to answer me, it means s such a lot. Until I found you and the wheelchair guy, I honestly thought I was the only one to have this horri le thing. Not one person in the medical profession, told me what it was I had, when I tried to dxplain they just looked ar me although I was mad!! And I must admit I was beginning to feel that I was, how do you explain a oain that does not come in waves like most pain but feels like it is continually flowing (yes like water I suppose) down the legs and out the bottoms of the feet...its good to know at least one other person understands what I am trying to say xx Please take care, and do whd i cannot always do and that is to pace yourself x
It is inflammation of the arachnoid layer of the meninges which are the membranes that surround the spinal cord and brain and hold in the spinal fluid. Over time this inflammation can cause the nerve roots / cauda equina nerves at the bottom of the spine to stick and adhere together and to the dura/ arachnoid layer this is called adhesive arachnoiditis.
So sorry for your suffering. I can identify with your sleeping issues. It definitely wears on you to not sleep while dealing with such pain! I pray for everyone dealing with such suffering. No one should endure this type of suffering. I have my days where I question if life will be bearable for years to come, living in pain. God bless you! 🙏🙏. You’re in my prayers.
Thank you so much for your kind words and empathy- yes the sleeping issues mixed with a severe flare are horrendous. Then the pain never ends … it can push us into very dark exhausted places. I am thankful my doctors are willing to help with medication.
Thankfully I haven’t flared again since that time in January/ February 2021 so my sleep has been better. That helps. It took about a month or so after the flare the regulate back again partly due to steroids and partly due to the ‘fight or flight’ response our body develops..
I try not to think too much about the future. For now I have remained in a more stable manageable place. But it hasn’t always been like that so I really do feel others pain who feel like the really hard times just go on and on. I have lots of daily symptoms and pain but nothing like the intensity in those videos.
Thank you again for your thoughts and prayers - may you too find more strength, peace and healing. Xx
@@beckyhillblog I’m glad you haven’t had flares since then. Everyone needs a reprieve from pain and the mental stress it causes. I’ve lived in pain or discomfort since ‘04, but not from Arachnoiditis. This is new. I’ve had brain surgery from a large cyst, kidney surgery for same reason;removed cyst and part of the kidney), gallbladder surgery, four eye surgeries due to a shunt I have for my brain cyst, over draining and caused my brain to fall (drop), and my eye droop. Those surgeries caused corneal neuralgia which is a horrific pain to live with in the eye. A hysterectomy in ‘18, then developed an infection shortly after. It was untreated for long enough it developed into pelvic inflammatory disease which began a series of events. The PID caused my body to attack itself, adhesions spawned throughout the abdomen….everywhere, including 6 partial bowel obstructions. It took drs forever to agree to go in and do something. It took 3 hours to operate and even had ascities or fluid in the abdomen that was full of inflammatory cells. This whole thing, attacked my spine and caused my Arachnoiditis. I had pelvic surgery just three months after the abdominal adhesions surgery, followed by two procedures to remove two large kidney stones.
It’s been a life of struggles and pain but I’ve kept going for my kids. Two boys, that are grown and my youngest in the Navy, keep me here. I’m divorced and living with my disabled mother, so my future does worry me. There’s no other family around and I feel myself deteriorating in mobility, pain increased, and mentally dealing. But one day at a time is all we can do.
God bless you and thank you for documenting your experience. It’s been helpful to me.
@@Langolin1998 I am so sorry to hear about your very difficult, long and complex journey of so many diagnosis that also lead to arachnoiditis. Wow it must have been so hard to work out what was going on half the time… and so discouraging when problems and pain never end and seem to somewhat multiply.
We have to find ways to live and have key things to keep living for on the days when life is just so impaired by darkness and pain.
I am learning to be better at not dwelling on the future. But this doesn’t mean I am not also realistic. But in the end - none of us really know what tomorrow will bring. We can only do our best today, as you said, and hope for strength to face tomorrow- and the challenges that will inevitably come.
I pray you will have the strength, wisdom and deep love for those around you that will keep you centred as you face the rollercoaster these conditions can bring. Take care & thanks again for taking the time to share your story!
@@beckyhillblog thank you. And beautifully said….staying focused and for me, even more focused on prayer for strength and encouragement.
I look forward to seeing more of your videos for learning and coping. Hope you have a good day! 😊
I never wanted to be on pain medication, but if you can find a doctor to give you anything that will help, please take it. The pain you are in warrants medication. I have had adhesive Arachnoditis for a long time. I wish I started pain medication sooner than I did. No one deserves to feel like you do.
I also have adhesive arachnoiditis, and truly the only thing that helps my pain is pain medication… And there is no shame in that, but doctors and pharmacies have tried to make us look like druggies (more like the CDC and DEA, which the doctors and pharmacies are taking to the extreme) I get enough pain medication to make a positive difference right now, but I know at any day that this could end, due to this miss-guided war on drugs
Thank you for taking the time to leave such a thoughtful and empathetic comment. I am so sorry you have had to face this level of pain for years. When I am that bad I have to take oral steroids, anti-inflammatories and pregabalin on top of my normal LDN dose. Although in reality it hardly seems to touch those levels of pain. For me it's only the IV methylprednisolone that really stops and reverses those pain levels.
@@timgreen1835 I am so sorry that people face such a battle to get pain medication. Only those who have NEVER felt THAT MUCH PAIN could really stop people being treated for that pain. For myself - I have never got on with opiates anyway. They never worked for me and I had too many other side effects so I could never tolerate them. But that means I can now take the LDN which did seem to help me come off the pregabalin longer term - although I still need it for the flares. Although really I think it's my combination of other anti-inflammatory meds - prednisolone and diclofenac (& omeprazole to protect my stomach) that really controls the pain and prevents further damage.
Deseo su pronta recuperacion
When I get a flare up like that, I find it helps me if I Rock my body from side to side.
It foes not reduce the pain but it gives you something else to concentrate on.
I also fund if I lay with my legs outstretched and force them to stay straight so my leg muses are tensed, I dint feel the pain in the legs so much..it is just the worse pain ever..mine is from the mostly removal of a 3.5 inch arachnoid cyst. The parts ghat were earapped tightly round the spinal cord were in surgeons words, mashed and destroyed as much as possible...but several years later its regrow, because of scar tissue it cannot be te operated on, it has now pushed my coccyx out of shape and go one dude so it's like sitting on a ( my description) tennis ball.
I have a flare right now, I have not slept the pain will not let me, I find the quickest way to get it to settle us to stay in bed laying flat, or on my side, but not curled up just straight out...your descriptions of pain suffered is same as mine.
Am going to play this to my doctor so she will know I am not talking strange
Because that's how she looks at me, as if I am telling stories...I am do sorry you are suffering too, but I am hlad I have found you on here
Thank you for sharing some of your story and I am sorry to hear about your ongoing pain and suffering. We all find our unique ways to cope - but we can equally learn stuff from one another too. I am glad my video has helped you - I hope you find more relief and symptom management moving forward. With empathy and love, Becky x
@@beckyhillblog thank you so much for reading and taking the time to answer me, it means s such a lot.
Until I found you and the wheelchair guy, I honestly thought I was the only one to have this horri le thing. Not one person in the medical profession, told me what it was I had, when I tried to dxplain they just looked ar me although I was mad!! And I must admit I was beginning to feel that I was, how do you explain a oain that does not come in waves like most pain but feels like it is
continually flowing (yes like water I suppose) down the legs and out the bottoms of the feet...its good to know at least one other person understands what I am trying to say xx
Please take care, and do whd i cannot always do and that is to pace yourself x
Hola soy de Mexico y no hablo ingles y quiero saber que esta enfermedad no encontre nada de esta enfermedad en español
what is arachnoid itis
It is inflammation of the arachnoid layer of the meninges which are the membranes that surround the spinal cord and brain and hold in the spinal fluid. Over time this inflammation can cause the nerve roots / cauda equina nerves at the bottom of the spine to stick and adhere together and to the dura/ arachnoid layer this is called adhesive arachnoiditis.
Honey. I'm suffering with you. It's torture. I know what it's all about. God bless us
I am sorry you are suffering so much too! 😔