Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
I don't know if any of you are like me but I've often driven myself crazy trying to determine the derivation of my pain. Is the achy/tingling pain in my legs radiating from lyme arthritis in my joints. OR, is the achy/tingling pain in my legs radiating from nerve damage/inflammation from neuropathy. I've wanted to understand THE SOURCE as there are different treatments for each, albeit if they are just palliative. I've never understood why LLMDS, neurologists, rheumatologists could not more clearly define THE SOURCE of the pain for lyme patients. Shouldn't there be some consistency there in terms of causation???
Well, as I look into rheumatoid arthritis more I think I can understand the confusion. Different diseases, like RA, can have a form of peripheral neuropathy associated with them. I didn't realize that peripheral neuropathy, especially in the lower extremities, is fairly common in RA patients. Apparently, the autoimmune component of RA can attack not only the joints but the nerve endings, especially in the legs/feet...
I read that some RA patients couldn't get relief for the neuropathy from taking drugs like Neurontin but only got relief when they took DMARDS (like Enbrel or plaquenil etc) for their joints....
Anyway, perhaps that's why we see certain drugs like Neurontin/Lyrica working for some lyme patients and not others...maybe that's why DMARDs work for certain lyme patients and not others (the coinfection issue aside).......ie the pain may actually be radiating from the joint area...
I think it's also interesting to note that scientists have found the same autoimmune alleles (HLDRs) that are active in Rheumatoid Arthritis are also active in lyme arthritis patients that don't respond to antibiotic therapy. I wonder if some lyme patients with stiffness in their joints are actually suffering from lyme arthritis but don't recognize it because "their joints aren't swollen like those with RA and, of course, there's no elevated RA factor (good diagnostic test)". Therefore, I wonder if some of the "neuropathic pain" of lyme patients in the arms/legs that doesn't respond to Neurotin/Lyrica might actually be more joint-related and helped by a DMARD??
I know by now you guys are thinking I'm an idiot and I should have realized all of this sooner...But, hey, I have lyme disease so I'm not always the sharpest tool in the shed
Anyone have any comments/experiences to add?
From Johns Hopkins re: Rheumatoid Arthritis:
Neurologic Disease. The most common neurologic manifestation of rheumatoid arthritis is a mild, primarily sensory peripheral neuropathy, usually more marked in the lower extremities. Entrapment neuropathies (e.g., carpal tunnel syndrome and tarsal tunnel syndrome) sometimes occur in patients with rheumatoid arthritis because of compression of a peripheral nerve by inflamed edematous tissue.
Posts: 1155 | From Southeast | Registered: Oct 2005
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Has no one else had any confusion over this besides me???
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
I certainly have been mulling these things over.
With my treatment I have had improvement in some symptoms, but feel like what I have been calling neuropathy is worsening.
It is hands and feet/lower legs, bilateral with a burning, tingling, almost bruised painful sensation.
I never considered it could be arthritis before as I had associated that more with joint pain and stiffness.
Racer, funny u mentioned that test as the first neuro I saw when all this started dx me with CIDP. Then MS...well, then I got tested for lyme.
Posts: 47 | From Texas | Registered: Oct 2010
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posted
I was DX with Sero-NEG Rheumatoid Arthritis & Ankylosing Spondolitis from an elevated Anti-nuclear Antibody (ANA) and Tumor Necrosis Factor (TNF) tests; film showing joint destruction; swollen inflammed joints upon exam; and all-over body pain. I think it is all in the Lyme package.
Like Bugg, I have so much going on I cannot document exactly where my pain originates, I just know it's there. I have taken years of Remicade infusions, Enbrel injections, Plaquenil, and opiates with little improvement in pain, stiffness, or mobility. I move around like a snail and have gained over 50 lbs. since I've been ill (about 12 yrs).
I would think our doctors could put some of this in perspective. I try to separate it out but I really don't know what or where I'm treating and that is dangerous.
Now I have Morgellon's on top of everything else. I'm reluctant to take Rocephin IV's because I was taking IM Clafaron twice daily when the Morgellon's popped out all over my body. Spending a week in 2 separate psych wards didn't help matters and trying to explain that I wasn't causing the lesions fell on deaf ears. An awful experience.
Racer, could my PCP order the test for Chronic Delmyelinative Neuropathy and where do I go to get tested? Eliminating one source of pain would be of immense relief.
Posts: 245 | From Texas | Registered: Jul 2009
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