What actually is the reason for the stiffness in lower back and neck in LD? Is it arthritis or congested lymph system?
x-rays actually show degenerative changes in my neck and back, but is this due to infection? Osteoarthritis is supposed to be just wear and tear.
It seems odd that at the same both hips and ankles are becoming affected and my neck and lower back are getting worse. My neck and back have been affected for 13 years since I first got sick but the rest is new and happening at the same time. I feel like I'm falling apart.
Posted by mimi (Member # 6680) on :
marz, I would love the answer to this as well! I hope someone comes along to help In the meantime I do feel for you and hope you get some relief soon mimi
Posted by Aniek (Member # 5374) on :
Marz,
My LLMD says its inflammation. I also think there may be a neurological connection.
I found this stiffness and pain controllable with a muscle relaxer. I take Flexeril every night. I started with 5mg a night, and increased by 5 every week until I reached 30mg, the maximum dosage. It was a huge difference.
I've since dropped back, but will probably increase again.
Flexeril does cause fatigue. You get used to it, especially if you start low. But I do really need to sleep a minimum of 8 hours most nights, ideally 9.
Posted by Marz (Member # 3446) on :
The inflammation part confuses me because since the x-rays show osteoarthritic degeneration, I thought I understood that isn't caused by inflammation.
When I was 13 (decades ago) I had either juvenile rheumatoid arthritis or rheumatic fever and my joints were definitely inflamed then. Yet the joints involved then show only osteoarthritis now.
A doctor now thinks I probably really had LD then before they knew it existed. And got reinfected again 13 years ago.
I just checked flexeril and it sounds like it's for short term use only. Also isn't it habit forming? Are you taking it long-term?
Posted by Aniek (Member # 5374) on :
The inflammation I was talking about is inflammation of the muscle. It's different than the degeneration, but possibly connected. Since you have the Lyme, the body reacts differently and the inflammation could be your body trying to address those problems.
Flexeril has not been officially approved by the FDA for long-term use. That means that there haven't been the proper tests, not that it is definitely not safe. I've been on it for over two years.
I stopped taking it for a couple months, and I had not problem with the transition. I didn't stop cold turkey though, I took a few weeks to lessen the dosage. But after a couple months my pain returned and I started again, but at a lower dosage.
I started Flexeril before I was diagnosed with Lyme. I was working with a pain specialist who had diagnosed fibromyalgia. Although I didn't agree with the diagnosis, he really understood and kept up to date on all the research of pain medication.
Posted by bettyg (Member # 6147) on :
Me too; had this for 30 plus years.
misdx for 34 until correctly dx 6-04.
Pain dr. put me on baclofen muscle relaxer for MS/spinal cord injuries. It did help my popping out hip when I walked.
Pain is excruciating; I use frozen ice packs and moistened heating pad on my neck/lower back/left groin area all waking hours. Temporary relief.
Welcome to our world of lyme pain & inflammation.
Posted by breathwork (Member # 567) on :
The neck pain definitely is one of my symptoms for lyme and babesia. When the babesia is not under control it is simply misery. That's when I know I am relapsing, we test for it and it's usually back for another round.
When it's babesia caused pain, narcotics and chiropractic care help, but when it's just my lyme stuff, arnica gel helps a lot, along with my favorite chiro. She's my best gal pal anyway.
Posted by gwenb (Member # 7217) on :
I had extreme upper back/neck pain and stiffness. I believe what has helped me the most (I have not yet taken antibiotics) is a very low carbohydrate diet and magnesium. My pain and stiffness has gone down by 85-95% - one of my most noticeably decreased symptoms.
Gwen
Posted by minimonkey (Member # 8693) on :
I've lived with these spasms (and the associated head-agony) for 18 years now! I, too, find a very low carb diet helps me a lot. My neck and back spasm constantly, and I have the popping-out-hip thing, too...
The crushing bhead pain and "stiff neck" of lyme are often actually meningitis -- lyme meningitis isn't fatal, but it can sure make you wish you were dead at times...
Posted by krazykt1 (Member # 3739) on :
Check out adrenal fatigue symptoms, you might be happy you did..I am. I'm in a rush, otherwise I would search out a link to post here., but all the neck,back pain, hip degeneration,and more including babs sx can be adrenal..Google adrenal fatigue/exhaustion kt
Posted by krazykt1 (Member # 3739) on :
Wanted to add that I found that I'm a dead ringer for Wilson syndrome which involves adrenals as well as thyroid (it's all related) Involves low BP,heat/cold intolerance, dizziness etc etc
Posted by Marz (Member # 3446) on :
Thank you krazykt1!
I checked and I have 30 out of 50 on the list of symptoms for adrenal exhaustion.
I'm also hypothyroid, but that was true before LD and it's under control with synthroid. My body temp is always low anyway though.
The funny thing is that when I was really stressed out last summer and thought I might be high adrenal, I ordered a salvia test kit from a reputable co. but I tested normal. I wondered what it would take to register since I was SO stressed I was having palpitations rubbery legs and bad fatigue.
Also, the site listed things to take to build up adrenals and I take many of them.
Starting to feel like a hypochondriac, so I'll quit!
![[confused]](graemlins/confused.gif)
![[Razz]](tongue.gif)
In the meantime I do feel for you and hope you get some relief soon