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Well, Nancy, from one Pain in the Neck to another…
I have had terrible, terrible neck pain. All manner of neck pain. Keep in mind, my dx is RA with a PRA onset, so my initial pain was right at the base of my skull, and I was like a moth pinned to a board for about 12 hours. Horrific.
Since then I have had it come and go more mildly. Sometimes it is in that some place, but I have had it often in my glands (tonsils), my adam's apple, the tendons or ligaments in my neck, and of course my jaw and my teeth/gums. Really. I never dreamed RA caused this stuff.
Given the fact that I have a history of thyroid cancer and Hashi's, you'd think my endo would find it at least a wee bit interesting that my RA has been so intensely focused in this area of my body. But no kidding, he seems to find no relationship whatsoever. His words, “Two different worlds.” It makes me a bit paranoid to have so much pain in the same place I once had cancer, but from what he says, it is not related, and not to worry about that.
At any rate, despite the different dx, I wanted you to know you are not alone. It is very tiring to have this kind of pain, and I am always relieved when it moves on to some other place, at least temporarily relieved! 😉
[user=145]ndpblake[/user] wrote:
Has anyone experienced neck pain, and if so, was it connected with Scleroderma? I had minor neck pain and went to physical therapy for sciatica in my leg, but they gave me therapy also for my neck (that is, deep massage, I would call it).
Hi Nancy,
I can't help in terms of how scleroderma may affect the neck and head to cause pain except in possible hardening of the tissues in those areas, but you might be interested in this article that Eva Holloway found relating infection to half of all sciatica cases and the suggested treatment being antibiotic therapy!:
Neck pain is classic for Lyme disease and it's coinfections, too. Have you considered being tested through IGeneX? There are a few here with scleroderma and Lyme disease, as Kim can attest. 😉
Of course, neck pain can be associated with degenerative disc disorder, various forms of arthritis (like reactive arthritis and spondylarthritides, but in RA the spine is usually spared), or injury, too, but if you've been checked for these possibilities and they've been ruled out, then it might be worth pursuing Lyme testing.
Interestingly, I had both severe neck pain and sciatica with my Lyme…the neck pain cleared up pretty quickly with Lyme treatments, but the sciatica made a return when I changed my protocol and came off biaxin for a period of time. I think Eva can share her story of biaxin and sciatica with you, too.
Hope you find your answers soon, Nancy….you, too, Tiff!
Peace, Maz
Yes, Nancy I have it too, am a RA girl. Try alternating heat and ice for the pain, and get yourself one of those pillows with the tiny beads in them, it will condorm to your head and neck while you sleep. Do not buy the Tony Little brand on HSN, I returned it, it was not flexible enough. Also, consider if the pain is at the base of the skull the state of your sinuses. They can back up in that area and cause alot of pain and pressure. I wish you luck and much needed relief!
Hey Nancy,
My neck pain has improved with Lyme treatment although not totally gone. My neck is still my worst SD site with nothing pinchable. 😕
Take care…….kim
Cannot believe how quickly you all responded. Now I have so much to think about. I haven't been tested for Lyme. It is a possibility because I lived on an island in Narragansett Bay, RI, where there is a lot of Lyme disease – close to Lyme, Connecticut. There were sheep there from the Revolutionary War. I took care of a Dalmatian who ran away, and came back covered with ticks. I do remember taking them off him, but couldn't get them all, and took him to a Vet because he was shaking with fever. He recovered, but maybe I didn't. This was way back in the early 70's.
Thank you Liz, Maz, and Tiff and Kim. I hope you do not have anymore neck problems. Interesting article, Maz, about sciatica and antibiotics.
You people are great. Nancy
Yes neck pain, jaw pain, head aches, etc. I had the neck pain on and off for many years before my SD became active after I had it all the time. Now the neck pain is VERY rare. My teeth too have returned to where they were. I used to have the neck pain when I rode the motorcycle after about a hours ride again going back many years. The bad news is that I never really found anything that helped the neck pain. I hope that your experience is different. I did not have skin thickening on my neck but even without the skin issue on my neck I had the pain.
Thank you Jeff. You are still around after all of that before , so I can stop worrying. Sorting some of this stuff out takes a lot of time. Appreciate your answer. Nancy
I find your comment about pain after your PT interesting in that when my SD was going strong I had the same result with OT and accupuncture, increased pain the next few days. Now with things calmed down as a result of AP I am back with accupuncture and it seems to help.
No more PT on the neck for me for awhile! Very painful, even though it felt good for a day. Going to attack the sciatica for now for that is what I originally went to PT to help. Maz's link to sciatica caused by infection is very interesting. Wonder what kind of a fight I would have down here in Florida to get an antibiotic for that! Maybe I do have Lyme. Nancy B.
…but in RA the spine is usually spared.
Maz, that is a really important clue! I have had neck pain on and off for years and after a being tossed from a horse and having an MRI, I was told I had arthritis two places in my spine…and a broken L4 transprocessor.
So does lyme arthritis show up on MRI's? I suppose this could be the other “arthritis” types you mentioned.
What are the differences between “RA” and “Lyme?” Or is RA really just going to be eventually proven to be an infectious disease? I also have to chuckle at myself and ask why an MPer is so concerned about dividing the “pea soup.” I have these lumper and splitter battles going on in my head! LOL
For those with neck pain…Nancy and Tiff…There is a topical cream that a local herbalist makes that I have found offers relief. It is called Arthritis Joint Relief Cream with Tumeric and MSM. The herbalists website is called: http://www.taylormadearomatherapy.com
There are more ingredients in it than listed in the title; I think the most important is the cayenne as it is the pain blocker. Do wash your hands afterwards and don't get it in any tender tissue areas like your nose or eyes.
Michele
Has anyone experienced neck pain, and if so, was it connected with Scleroderma? I had minor neck pain and went to physical therapy for sciatica in my leg, but they gave me therapy also for my neck (that is, deep massage, I would call it).
Both times I had extreme neck pain one day afterwards so that I cannot turn my head side to side or up and down without really hurting.
Since I am having issues with my teeth, I notice that I now have an overbite (my upper teeth come over my lower more so than I have noticed before), and beginning to have hardening of the skin in one leg. I am wondering if I am having thickening of my head inside or outside, maybe the esophagus, or whatever, because of Scleroderma.
I do not have a reliable Rheumatologist here, or have anyone to consult with about Scleroderma, only what I read. There have been some messages about pain on RB, but they do not fit.
Thank you from A Pain In The Neck Nancy
[user=50]Michele[/user] wrote:
I have had neck pain on and off for years and after a being tossed from a horse and having an MRI, I was told I had arthritis two places in my spine…and a broken L4 transprocessor.
So does lyme arthritis show up on MRI's? I suppose this could be the other “arthritis” types you mentioned.
What are the differences between “RA” and “Lyme?” Or is RA really just going to be eventually proven to be an infectious disease? I also have to chuckle at myself and ask why an MPer is so concerned about dividing the “pea soup.” I have these lumper and splitter battles going on in my head! LOL
Hi Michele,
A serious accident/shock/injury could definitely set off a latent, underlying infection of Lyme disease and RA. I can attest to this, as it happened in my case. :crying:
Yes, as far as I know, Lyme arthritis can show up on X-rays and MRIs and would look like any other type of inflammatory or degenerative arthritis. In the spine and in the brain (as in neuro-Lyme), it might also appear like MS with the typical scarring and lesions. Columbia Lyme Research is doing a lot of research in this area:
As for the differences between Lyme and RA (if Lyme is the overwhelming infection in this scenario), then it can be hard to distinguish without some type of reliable, positive testing or a clear clinical history of past tick exposures, rashes, etc, as Lyme can mimic all kinds of “autoimmune” diseases. Lyme/RA can be almost indistinguishable from RA, as it's not unusual to have positive anti-CCP and/or RF, as well as the other usual RA lab markers.
One thing that Dr J, a LLMD in SC states on his website is that Lyme joints tend to contain a fibrous, cheesey exudate (nice, huh?). Here is the relevant section on his site, which may not be visible on MRI and only when opening the joint for replacement:
http://www.jemsekspecialty.com/lyme_detail.php?sid=8
“In our neuroborreliosis population, many patients have musculoskeletal complaints, and occasionally these are the major and most debilitating problems, sometimes accompanied by fever and chills. Typically, large joints are involved and the arthralgias are migratory, which in fact fits the classic description for LD. In a few cases, actual arthritis is evident, although only rarely does this persist. When it does persist and comes to joint replacement surgery, we have anecdotal reports in which orthopedic surgeons, upon opening the joint in question, discover a cheesy, fibrous exudate which is uncharacteristic for the usual bacterial infection and which proves to be negative or sterile on routine smears and cultures. This is the prototypical “Lyme joint” which almost no one in the operating arena ever recognizes. In fact, some surgeons stop there and refuse to go on, believing that their patient has an unusual and previously unrecognized infection that makes their job impossible. However, if the arthroplasty continues after these initial concerns are addressed, we have noted a high rate of success in joint replacement (personal experience).”
Worth noting that Dr J isn't talking about Lyme/RA per say, but “Lyme arthritis,” as a person can have arthritis without it being diagnosed as RA with Lyme, too. 😉
Really, the only difference between Lyme/RA and regular RA, as far as I can fathom is the type of infection(s) involved. The symptoms may appear strictly as a textbook classification of RA or may come with an odd mix of other unrelated symptoms that just don't fit the classic definition of RA. While it's probably true that every RA patient will be unique in how their RA presents, it's also true of Lyme/RA. In my own case, my worst affected joints have been my knees, the large joints, though I was very severe and pretty much every joint was initially affected. As I've progressed on AP, though, it's clear that my knees have been the most persistent…right now, just one knee, like Custer's last stand! :X
I think Dr. Brown would like your question, “Is RA really just going to be eventually proven to be an infectious disease?” I think everyone here would probably like to know the answer to that and it's the “raison-de-etre” for RBF. Lyme (and its hitch-hiking coinfection friends) provides an excellent model for a chronic infection causing RA (and many other rheumatic diseases), which is probably why Brown included a chapter on it in his book. At the time of writing, Lyme was still a fairly new phenomenon and not much was known about what damage it could do to the immune system, but it's known today that Lyme can very much be the trigger of an already loaded gun for RA and there are quite a few folk here who can attest to that pretty unfortunate consequence. 🙁
As for lumpers and splitters, I sit somewhere in the middle on the fence, because I do think some infections respond better to some antibiotics than others and Lyme is peculiar in that it has this hardy cystic form that really does need special focus in treatment, as it is this form which is thought to be the cause of persistence. There are also coinfections, like babesia, a protozoan infection that only responds to anti-protozoals.
Kind of beating about the bush there, I know…but until RA is classified as an infection and much more is known about how different organisms behave in the joints and how well they respond to different treatments, there is still so much that leaves us all in the dark.
Peace, Maz
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