Arachnoiditis is an uncommon severe disabilatating form of Severe Pain Syndrome that is caused by many problems that affect nerve roots, one being Spinal Stenosis. Follow this link and read a paper by Dr Sarah Smith. Arachnoiditis.co.uk
If anyone has been diagnosed with the illness please contribute because I want to know as much as possible about peoples symptoms as i can because I am convinced that I have it. Many thanks, best regards Oldman1952
Hermes123
oldman1952 Hi there I've Been kicking around the pain block since 1969. I have repeated so many treatments variations off (pain relief) devices : medications Prescription as well as herbal treatments : way out of this world treatments, operations that make things worse, sometimes cure one thing only to make other things much worse. I 've been on a number and varied pain management courses : years of physiotherapy, applied heat and cold, Tens machines, the rack, "Oh so many other things and I'm still looking for help at the age of 81. But after all the articles, University medical papers' mostly pie in the sky, I do at last see for the first! some promising result coming of a pain free future, on the Minus side one has to wait 20. years for a definitive outcome, I probably will not be around then. Hermes.
Thanks for the reply Hermes123, during reading the paper written by Dr Sarah Smith one thing that was mentioned was a course of ketamine adapted for the individual so that the dose is regulated very closely so that you do not overdose on it. I am not sure why Doctors are worried about dependence because if you have pain like we have and for which I do not have words to describe it. If you have any reduction in the pain levels it is bloody good. I cry myself to sleep quite often because of the excruciating cramping of the muscles in my back and large muscles in the legs. It does not stop there though because I have spinal stenosis in the cervical region of the neck with associated scoliosis, thorasic spine and the sacral area causing the burning of the sciatic nerve. Good luck and best regards Oldman1952.
PS, I am just thinking about your fantastic age and here's me thinking about how many years of this pain I've got ahead of me.
Hermes123
Oldman 1952, age is just a number, it's what you have to put up with pain wise. I've been off the Richter scale with my pain and even made my own way to A&E. at 3am.
Not the best of things but no way could at home with that amount of pain.
Good Luck. Hermes.
Yes, I have Adhesive Arachnoiditis due to a missed steroid epidural injection that went into my spinal canal. Started with a severe headache, then electrical shocks, then damaging nerves in my leg, then bladder, random "gun shot" fires to my eyes which has damaged so far my nerves that now have constant watery eyes (it can eventually damage the optic nerves and go blind if aggressive enough), lost 50% hearing in left ear, random huge "gun shot" nerve pain in feet or hands..then feels like someone has taken a hammer and smashed either the bones in your finger or toes, random, severe 1,000"bee stings, either in backside area or rotates to the front side..like some has set you on fire. ALL OF THIS while taking 15-30 Mrs. Prednisone daily to help keep the inflammation down, because it is the inflammation that will make the Arachnoiditis progressively worse. Pain medication will only cover up,the inflammation but not control,it. Adhesive Arach is very very aggressive on me. Have only been attacked 4 times in 3 years. I am now left with only sitting up daily, about 30 minutes, a few minutes at a time.
Now, because I took so much prednisone to keep,the Arach inflammation under control as much as I could, from attacking me, I now have 4 fractures in my spine and can hardly move. You are not supposed to have any more surgeries because this usually will make Adhesive Arach worse, so,if I try to fix my broken back the Ad. Arach could finish me off. I had 2 DENTAL procedures which actually set the Arach attacking me the first 2 times. I am afraid to have back surgery but cannot lay here in pain forever so am trying to decide what to do.
This is a disease from hell. So very sorry if you have this. :(. 
I pray that you do not.
Kris
Hi KrisHarris, thank you for your post was very much worth reading. I am sitting here at my laptop grossly in pain, don' know how I am doing it but my right hip is in spasm and the bottom of my back has just done the same which is now traveling down my right leg. Can you tell me just out of interest if you had problems from the medical professional when you started with the back problem not believing anything you said to them? Plus every time I go to see another health professional they always want to know the story from the begining of how when, where and what, you know where I am coming from I think. That is why I am trying to find out I doctors believe patients when they say that they have some of the most horrendous pains in their bodies that can not be verbalised in any word in a dictionary. I have so many complaints and illnesses that can cause unbelievable pain that I put down on paper over 200 effects that I have to deal with every day. Thanks again for your great response and I hope that We can talk again some other time. Take care and best regards Oldman1952.
Yes, I live near Atlanta, Ga, and not one doctor knows or is familiar with Adhesive Arachnoiditis! Some even want to perform even more epidural steroid injections as a solution! Others refer you to a pain clinic who only want to throw pain MEDS (while not a bad thing if you need them) but they do not realize that it is the IMFLAMMATION that will cause the Arach to get progressively worse. Especially during an attack you usually need high doses of prednisone, etc. to put it in remission. Go on the website "Arachnoiditis Everyday. There are others who can offer support and valuable info. Also look up Dr. Forest Tenant and he has a protocol to print out and take to doctors to educate them and also how to help improve this condition in several ways.
This disease, as you know is very serious..can lead to blindness, deafness, paralysis, etc. Dr. Tenant says we need to have a plan in place before it possibly gets to this point. He is so right.
I am sorry that we are talking only about such serious issues. I wish the very best for you. Pls let me know if you have found any imfo that is helpful, as it will be greatly appreciated! I am going to try to see a dr. In SAVANNAH, GA, as soon as I can possibly move more, and I will post on that also.
It could be a combination of rsi's causing (mostly) soft-tissue damage. I have experienced pain in one of my hips and both of my shoulders and also sciatica type pain in my lower back which, given the the age and conditions of both my bed and sofa and the amount of time I have spent sitting around for one reason or another I pegged the majority of the damage down to them.
My shoulders are for the most part better 2 years later even though I still have the same sofa a solution has been to stuff pillows underneath the cushions to bring my elbows higher up so they aren't being jammed into my shoulders anymore.
My hip problem was mostly caused by trying to hold myself level for hours at a time until I realised how uneven the cushion was. It may have also been exacerbated by sitting with my legs firmly crossed for extended periods too.
This resulted in first a new bed/mattress 6 months ago which has cured my excruciating lower back pains which when I had them were so painful they impeded my breathing. I have slept a lot without a pillow or with something very minimal and often laid on my front. It took a couple of months of this to stop the back pain and the spasms, the latter of which I think were primarily caused by having sat at odd angles and pinched my nerves in my hip. I have also had, for several years since around the time I had a round of operations for crohns, a numb patch of flesh on the front of the leg with the hip problems and as the pain has subsided due to lifestyle changes the feeling has come back frequently, and while it is not painful, it is an indication of nerve damage somewhere around the lower back and spine. I actually noticed the numbness before my operations and I believe now it was caused by the way I sat in my chair, pressing the bottom of my spine into the back of my (reclining) chair for 12 or more hours a day sometimes only being out of it a couple of times in the day for roughly a couple of years.
My hip problems I have also chalked down to being again an rsi caused while sitting and/or lying down as for a couple of decades I think I mostly laid on my right side. My problem hip is my leading hip (right side) but I haven't been doing sports for so long that is unlikely to be the cause.
So now, I don't lie on my right side if I can avoid it as that hurts my shoulder too depending on how I do it. I must be constantly aware of my comfort level and adjust it as quickly as possible to avoid any damage I can. Which is what I suggest you do and if you can manage to try it out for a few weeks which should give you an indication of whether your daily routine is causing the problem, and possibly with something to take a bit of the edge off the pain (I take Pain meds several times a day for chronic neuropathic pain in some scars and for crohns pain).
The spasms have been worst sometimes when receiving IV's, when they were a symptom of an allergic reaction to the treatment itself - iron in one and I think infliximab in another.
Crohns is closely linked to arthritis like symptoms due to its propensity to exacerbate the spread inflammation throughout the body. Treatments for it, to reduce inflammation primarily in the gut, are often usually used for arthritis with infliximab being a good example.
So in an extremely convoluted way, and by no means am I a doctor, you may be experiencing temporary acute and excruciating pain and by "simply" and thoroughly changing a couple of elements of your lifestyle either forever or for long enough, your body may slowly heal itself and return to normal without you having to explain yourself to ten different people who all infuriatingly have access to your medical records.
If you do follow the medical professional route, and I advise at least telling one what you intend to do as they may have some physio tips and/or can prescribe better pain meds, you need to write things down for your own reference and not only record in brief what they say to you but also what you say to them or you'll just drag things on for longer than necessary and in your case probably cost yourself more money with extra appointments. I live in the uk and whilst free at point of use, repeat appointments just to finish telling the whole story can be a real drag and actually costly with transport etc.
Anyhow, these are my thoughts based on your own description of your symptoms. Joint pain is unlikely to heal overnight but your quality of life in the meantime can I expect be much better. At the point I started to struggle to sleep was when I did something to help myself but I am now very careful not to repeat the same circumstances which led to where I am now, and basically do so for entirely selfish reasons (though looking miserable rubs off onto those around me too so is to be avoided for them too); that said problems should be dealt with before that, again for mostly selfish reasons.
Wishing you well, anyhow...
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