puzzling pain syndrome

[jmarkb777]

Hello all,
I am new to the forum. I have a condition that might be arthritis, but the dr's aren't quite sure if it is or not....their opinions vary. Here is my situation:
I am a 53 year old male who was in good health before the onset of my condition which began on april 22, 2005 this year. I awoke that morning with exptreme pain in my hips and legs. There was no reason why I should have any pain there.I was fine when I went to bed....my usual exercise the day before was only walking, which I did everyday for about 30 minutes, so this was already unusual for me.
after a couple of weeks of suffering badly with severe pain I went to a clinic in may and was diagnosed with " a lumbar neuropathy". Since then the pain became worse and escalated by going into both shoulders and upper arms(extreme pain in shoulders upon waking), my lower back, spine, neck, buttocks, and both feet. I went to an emergency hospital on june 6th....they took blood tests, back x-rays, ecg, and a physical exam by the physician...the physician told me he thought I had ankylosing spondylitis.....my test results were: HLA B27 negative (I did not have) RF-5 (normal) ESR-15 normal uric acid 4.6 NE (normal) and all the other blood tests came back in the normal range..also back x-rays were fine..no problems were indicated on any of the tests performed..when i called to get this information the next day I was told by another physician that I don't have the gene for ankylosing spondylitis, just all of the symptoms. The pain is most severe at nite when trying to sleep and especially in the morning when I try to get out of bed. I am so severely stiff, and painfully sore that I can hardly get up. Simple tasks are now difficult to do, such as getting dressed putting on socks and shoes.(its almost imposssible to lift my legs up to do this now) Walking is very difficult because of the pain in hips, legs and feet..when I walk it just feels really odd now.. When I sit down and get up the pain is acute and I have to stand & wait at least a minute before I can start to walk.....also sitting down the pain is severe, its painful to even sit for longer than a few minutes.....the back side of my legs starts to ache & hurt within moments and my feet as well.I have some swelling around my right ankle on the inside and top of my right foot. I was prescribed hydrocodone for the pain which helps a little, but doesn't adequately treat this. It is a very deep kind of pain that feels like it goes thru muscles, nerves, tendons, ligaments, etc.all the way to the bone, and the pain can be very sharp, especially upon sudden movements etc.Since the onset of this condition it has worsened day by day to the point where I am worried that I will not be able to get out of bed or walk etc. I am always fatigued.... It has disturbed my sleeping habits also. I only can sleep a few hours a nite because of the severe pain....every time I try to turn over in bed I am awakened by this. I can only sleep on my back. I also get chills, cold sweats after doing simple tasks, and feel a kind of weakness in my legs. I have become nervous and full of anxiety because of all this and overall I just don't feel well (obviously)....low energy level too. I have been to another dr. since the ER visit, and he thought It could be some kind of arthritic condition, but he doesn't know for sure and seems puzzled by my symptoms. I looked on the internet and discovered a condition known as polymyalgia rheumatica.(PMR) My symptoms seem to very much fit this condition as well, altho no dr. has mentioned PMR to me. Seems each day this condition is worsening.
I would appreciate any input anyone might have on this....its been very tough to live with.
Thank you in advance for taking the time to read this and to answer.
John

[feelbad]

Sorry you have to live in this hellish nightmare.I can soo relate.i am suffering with the aftereffects of a spinal cord surgery that left me with lots of damage and very severe pain syndromes as well.i don't see where you have even had an MRI? or have you had one but forgot to write it?if you have not had one yet i would highly recommend one asap.I am kind of suprised that this was not already done when you look at all of your symptoms.you need a full spinal from top to bottom to see if there is anything wrong in that area.i know how much this all sucks,really.While you are going through all of this preliminary crap in trying just to get an accurate Dx, I would highly recommend seeing a good pain doc for the best possible pain control.They can offer you many different modalities for pain control that your other docs just cannot offer you.i did not get any real good relief for any of my painful areas until I saw my current pain doc.they have helped emensley.

Have you tried seeing a neurosurgeon at any sort of university teaching hospital?If you live near one,even a couple hours away it would be worth it to try and get there.They see so many really difficult cases and rare syndrome and disease type cases that they really have much more experience and overall knowledge on neuro problems.I ended up seeing the head of ns at our local university when trying to find out the best way to treat my cavernous hemangioma that was found purely by accident when I went for an MRI on my C spine for a possible herniated disc.I did indeed have a h disc, but right underneath it was this little glob that was not supposed to be there.The U that i went to was actually my third and final opinion.I did not have any real choice but to have this little SOB removed from the inside of my cord.i now live with an incredible amount of pain caused by all of the damage which includes three spinal nerves two spinal tracts and a significantly damaged sympathetic nervous system.gosh what fun we have these days.Sorry I cannot offer you any real answers.Unfortunetly a Dx may take many different docs and many different tests and lots of time to really get to the bottom of your actual problem.or it could just take one visit with a very knowledgable neurosurgeon to determine just what the issues are.All I can say here really is to above all try to be patient(I know, easier said than done)and keep pushing things with your docs until you get the answers to all of your questions.keep researching your symptoms, you may get lucky and actually hit the problem.i do think an MRI and a trip to a good teaching hosp,if possible would be the best way for you to go here.hang in there and please keep me posted on what you find.Good luck FB

[jmarkb777]

FB,
Thank you very much for all your great input. I haven't had an mri yet, or even found the right dr. to go to for one. I don't know if my condition falls into Neuro or rhematology category even, since one dr. recommends rheumatologist and another neurologist and so on etc. But having the complete spinal checked out makes alot of sense to me. I did have alot of lower back x-rays that turned out fine they said...but thats it. One problem I have is that I'm now not up to driving and my family is away until the beginning of the month. I feel so lousy all I do is try to deal with this pain, sitting is uncomfortable, standing etc...and alot of the time I just lie down because thats the only relief I get from it. I'm so fatigued all the time I don't even feel like calling places to find out anything anymore. I've gotten the run-around so many times too because I don't have insurance. Apparently Visa and Mastercard aren't appreciated when it comes to specialists. So at the moment I'm just not doing anything.....just worn out from all the previous stuff I've been thru. When I was at the Emergency room they kept me there for 6 hours! Didn't even offer me a glass of water the whole time, and trying to get information about what was going on with all the tests they took was a nightmare....once again, probably because I didn't have insurance and they just made me wait.
Right now I am trying to hold on until a family member can assist in getting me to the right place, the right dr. etc etc.I'm just not up to anything at this point since I'm so fatigued. I'll keep you posted and thanks so much for your reply. I am so sorry to hear of the pain you are suffering as well. Sounds like you have been thru a total nightmare with your spine and the aftermath of surgury. I hope your pain improves.
John

[feelbad]

Thanks for the kind words.Sometimes all you can do is 'hang".It really does amaze me that you have not had an MRI at anytime during this 'trying to find out just what is wrong" process.It would be the best thing to do.your problem could very well be coming from somewhere inside the cord at the nerve level which cannot be seen in any x ray.There is also the possibility of something lurking inside the cord like I have with the cavernoma.Honestly, you really do not really know just what is going on inside your body until you get a good look in there.Your lack of insurance really sucks espescially when you need to see specialists and get some sery expensive tests.but getting that MRI really is vital you know?Just knowing what the heck is causing all of this to happen to you will give you peace of mind as you cannot treat what you don't know.please let me know what you find out.i really think that seeing a good neurosurgeon instead of neurologist or ortho would be your best bet,really, for many different reasons.just keep pushin til you find the answers.FB

[DGO1223]

Sorry for your problems. It sounds like you MAY have something systemic going on, since you have pain nearly all over. You really should have an MRI, as xrays don't tell a whole lot, in detail. Or, then again it could be totally a spinal issue.

Have any of your Dr.'s ever mentioned MS? It would be unusual for a male, but not impossible, and causes a lot of diffuse pain in some.

Hard to imagine that any Dr.'s won't take credit cards in this day and time, as they want their money as quickly as possible, any way they can get it!

It's hard to say whether a Rheumy or a Neuro would be your best bet, you may have to see both at some point to get to the bottom of it. Exactly what kind of Dr. have you seen so far? A primary is not equipped to handle all this, in my opinion, and should send you to another speciality.

Did you have other lab work for anything else other than you listed? I would ask for copies of everything you've had done so far, and take them to another Dr.

I'm no expert, but have been through a little of what is happening to you.

Good luck, and keep us posted.