this is why i am bed bound 24 hours a day and why a powerchair or segway wont help me get outside because i cant stand or sit longer than 10 minutes, if i do then the pain goes past a 9 or 10 and stays that way for days.

i never talk about arachnoiditis because it is less known than crps and according to my medical team the treatments are basically the same except with arachnoiditis you have to be lying down all the time.

there is a lot of overlap symtoms from arachnoiditis to rsds and and some doctors even consider fibromyalgia at first,-- the big ones that stick out to me are the burning pain, sweating(temp control), memory loss/concentration, inflamation, sleep problems, nails/skin changes, nausea, swelling, spasms, gastro problems, fight or flight(loud noise makes you crap your pants and start flareup), major head aches, more sweating, hypersensitivity, severe cronic depression, suicide thoughts, develope fear problems due to pain, (bbs= bladder,bowell and sexual problems), joint pain, rashes/ulcers, feel like you have mono or the flu for sveral weeks in a row, eye problems and dental problems come later. thats just off the top of my head.

mike

Debbie, I was diagnosed 2 weeks ago with arachnoiditis. I had 5 back surgeries and lots of ESIs and myelograms since 2000. If you get this msg pls em

Sorry about the first reply... Debbie, thanks for bringing arachnoiditis up to the front. I was just diagnosed 2 weeks ago and am learning all that I can now. If you get this please respond to my email, tgent@att.net, Thanks, tommyd

Tommyd...

Debby hasn't logged in since October... so it may be a while before she replies.

You can tell when the last time someone logged in by looking at their profile... it will show right under their name.

Best wishes,
Abbie

Debby,

Wow, that was really interesting. I do have some spinal issues but have been controled with epidurals, weight loss, and excercise but my husband has had 2 back operations #1 was a disaster and the 2nd at HSS was a complete success and really has no back pain, function likes a normal person and does not take any medication for his back at all. But every once in a while and lately it has been happening to him more, maybe stress, he gets like spasms,cramps and weakness. I am going to make him read it. It could explain some of his symtoms that have always been there without pain since the 2nd operation but not enough for him to seek treatment for it.

Truly apprciate the effort.

gabbycakes

Hi Debby and others who can read this.

My name is Stevie. I was reading your post about possible Arachnoiditis. I thought I might be able to help you to understand something about it and to know if you have it.

First I want to say that if you had it you will know you do. Don't expect a doctor to tell you that you have it right off because of the way you get it. It is through Failed Back Surgery, Putting oil base radiography dyes into your spinal canal. They do this in order to perform myelograms on you. But more modern tests suggest the use of MRI's and or even a CT.

Mine first started while I was in the service. It generally starts with severe low back pain along with radiculopathy pain, (down the legs along with burning called neuropathy pain. As I said don't look for a doctor to tell you right off that you have it. No matter how bad the pain gets, they will keep telling you that it is something different, the reason being is because you get it from doctors making mistakes and is a good mal-practice suit.

It used to be that when you went to a doctor for low back pain and it didn't seem to go away and it might even have gotten worse, your doctor may have scheduled you for a Myelogram. Which this is bad because it is wrong for them to inject your spinal canal with any freign substance. It used to be Myodil, they found one disc then 3 months later another one. They tore my back up so bad. 49 years I have had this. After the Myodil, the 2 myelograms and both surgeries, he never told me what I had just that my back was so bad that I would wind up in a wheelchair within 5 years. Before the surgeries, it was my female organs and bladder that stopped working, then they did the back surgeries. Everything below the waist stopped working. Yes, I have to use a wheelchar. The pain is s bad that I just can't stand it.

Unfortunately, I go to the VA Hospital for my care, and somehow they seen to get away with not recognizing it as a bad crtippling disease. They don't recognize it at all. I don't know how they get away with it, but I am trying to find some answers. They keep turning me down on my service connected disability. I want to say for now, it is the most painful thing that I have and could ever imagine the human body could go through. It is horrible. I take 60 mgs. of Morphine three times a day, I have been taking it about 10 years and it has stopped working. But they won't change it. Check your state laws on pain control for chronic intractable pain and see what they say.

I have to go for now, I can't sit any longer, but I will be back.

Stevie.

I am now between the late third stage or entering the early fourth stage of RSD. Reading all of the sx.regarding the article. Why don't they just call it RSD? Almost all of the symptom's are just the same I also have a question for everyone here. Do you have problem's with cracking and chipping Teeth? It is driving me crazy,no matter how well I take good care of my teeth it seem's that it does not matter! Also being on SSDI and not having any dental benefit's is draining the little money that come's to me every month. I was just at my dentist's about 1 month ago,now when I look there are about 3-4 teeth that need fixing. HELP!! Any suggestion's Breezy55

Hi DebbyV,
I have both rsd (CRPS II) and Arachnoiditis. I had a medtronics morphine pump implanted improperly in my body. The doctor attached the catheter from the pump to my spinal chord with only one suture which became unattached while I was using a new VERY effective treatment for rsd. It is a drug called Prialt made from a sea snails venom. While it permanently cut my pain in half from the rsd after about six months, it was leaking down my spinal chord and caused extensive scarring in the coccyx and l5 vertebrae. I bring this up only because it is "common knowledge" that Arachnoiditis is incurable. This is no longer the case. A good friend of mine found some research on a new method of treating and removing the scar tissue over time without any dangerous drugs or invasive procedures. It involves a drug called Pentoxifylline, and vitamin E, taken orally twice a day. I showed my Dr. the studies published in the English journal of medicine, and he put me on the drugs after studying it for awhile. In the last six months I have gone from not being able to sit, or drive without extreme pain, to being able to sit, and drive moderate distances with mild to moderate pain. It seems as if their is a very initial quick reaction to the drug, then it slows and treatment takes 3 to 5 years for dramatic results, but the drug is very inexpensive, used extensively for off label uses, and has only mild side effects. The one danger is you CANNOT use aspirin, or NSAIDS, or any blood thinning drugs. It works on all scar tissue not just Arachnoiditis. My life has improved so dramatically I am trying to spread the word about this treatment. If you want to contact me about the studies (I can't post links because I don't have ten posts yet) you can contact me, or leave a msg here for me. Anyone suffering from this debilitating disease should have their Dr. read the studies before giving up. In addition to pain the scarring left me unable to relieve myself w/o extreme effort in addition to many other effects. I now have no problem with these activities. Sincerely Johnericus aka John Allen.

Hi Breezy 55,
I too have had a lot of problems with cracking and breaking of teeth over the last 18 or so years of rsd (CRPS II) and a couple of years w/ Arachnoiditis. Mine comes from clenching my teeth unconsciously because of the constant pain my body is in. The only "cure" I know of is to wear a mouth guard. There is a problem with this unfortunately as the ones your dentist can make fit and work very well but are about USD $400. I see you are on SSDI so that may be out of your reach. The other option is the ones they sell in stores or some pharmacies. These are in the ten to twenty dollar range, and don't work or fit as well. You should basically buy two of these if you go this route. You have to heat them to near boiling then quickly shape them to your teeth. This doesn't usually work well the first time, thus buying two of them. Fortunately in my case my injury is a result of an accident at work, so I have workers compensation insurance. As to why they don't just call all of these symptoms rsd... I can only suggest that they arise from different sources. However one of the reasons rsd is now called CRPS is because many of these symptoms arise from little understood reasons that may even overlap in their causes. Which again are still poorly understood. I myself have spent many thousands of dollars on my teeth due to problems such as gritting/grinding, dry mouth from opiate pain relievers, and excessive cavities caused by a pain medication called Actiq which is now known to cause cavities. Anyone still using this drug should know there is a newer version called fentora that does not cause cavities. Good luck to you with your teeth, I sincerely hope this helps a little. Johnericus

Please send links to these studies to** me My sister has been disabled for several years due to spinal adhesive arachnoiditis. thank you. Dee