I had tailbone pain pre-Lyme, but now it's just getting worse and worse. I have tried everything I can think of to relieve the pain. Does anyone have any ideas?
Sitting and lying down are murder, even with padding/pillows underneath or a heating pad under it or a special cushion to support it, and I'm too sick to stand.
Posted by disturbedme (Member # 12346) on :
When I first got very sick (when all the symptoms hit me at once), I got tailbone pain.
Like you said, it hurt so much to sit or even lie down. Even lying on my side would hurt my tailbone. I kind of just put up with it -- for nearly 8 or more months I think it was. I told my LLMD about it, but he didn't know if it had anything to do with Lyme since he never heard of it.
I believe (or rather, KNOW) it was my lyme, especially since my tailbone pain is pretty much all gone now (and I never did fall on it or anything like that to otherwise cause the pain). It took awhile, but I think my being on either Doxy or Rifampin is what helped. That or the lyme in that area decided to leave (or, more hopefully, they were killed by the abx finally and so no more pain).
I'm sorry I don't have any ideas though as I just dealt with it, though yes, it was very painful. I did try to use a donut hole cushion, and though that did stop the tailbone pain while I used it, it made my back hurt, so I never used it much.
Posted by AliG (Member # 9734) on :
I sat on an inflatable donut. It helped but was a bit awkward.
I had a large hot/cold gelpack & I tried sitting on that, it worked great!!
I'll have to go see if I can find out what it was called.
I didn't heat or freeze it, just used it for the cushioning buffer of the gel.
Sorry you're going through this. The tailbone pain was one of the most stressful for me. I was afraid it had something to do with my spinal fluid because mine was preceded by the WORST headache of my entire life. (I've had some real head crushers, vomitting included!!!)
I haven't had those things in a long time. I don't know if it was tackling Babs or lessening Lyme that helped.
I'll see if I can find the info for you.
Hope you feel better, Ali
Posted by Robin123 (Member # 9197) on :
Yeah - I get it adjusted by a chiropractor who knows how to adjust all the pelvic bones. The adjustment takes away all the pain.
Posted by Foggy (Member # 1584) on :
I had tailbone pain and it turned out to be an infected pilnidal cyst.
Show this to your MD & LLMD to be on the safe side.
Posted by jenschasinglyme (Member # 11193) on :
How did they find out it was a cyst??
Posted by SouthernCO (Member # 11167) on :
Had tolerable low back pain from L5 down to tailbone due to degenerative disk disease pre-Lyme. With the initial infection in 1992, the burning pain was nearly unbearable until that 1st infection abated. Of course I received no help from any dr who examined me. In hindsight, the terrible pain must have been due to the invasion of Lyme into the degenerating areas of the spine.
Since then, an EMG (nerve conduction test) confirmed that I had diseased L5 nerve roots causing neuropathic symptoms (pain, numbness, tingling) bilaterally in the legs as well as in the low back.
A discogram reconfirmed the problem at L5-S1.
Posted by AliG (Member # 9734) on :
They ruled out the pilonidal cyst with me by X-ray. I wonder how spirochetes feel about radiation.
Ali
Posted by bettyg (Member # 6147) on :
i suffered for many years with this; started after driving 10 hrs. to branson, mo shows in our only SMALL COMPACT car; and 10 hrs. home.
also physical therapist discovered my tailbone was DISLOCATED; so went inside to position it properly again.
however due to 2 severe falls as a kid, it no longer goes in, but juts out a little causing me pain but nothing like before.
best wishes! Posted by Ellie K (Member # 12056) on :
You poor dear. This symptom drove me to the ER twice, before I was diagnosed with Lyme.
For me, it starts in the tailbone and then radiates down the outsides of my legs, down to my feet and toes. In the begnining, though, it was only at the tailbone.
I am quite certain that mine is nerve-based and perhaps yours is too. I am still struggling with the pain, 9 months after those ER visits. At first, it improved substantially after treating Bartonella, but it has since come back while treating Babs.
I've been doing acupuncture twice a week, which helps minimally.
Sometimes I do heat therapy too: I use a hot buckwheat-filled pillows that you stick in the microwave before using. Try googling "Bucky" if interested.
I've go to say, though, that what reallly works for me is strong narcotics (I use Norco). God Bless my LLMD for prescribing them-- I could not live without them and I mean that literally. Don't be afraid to assert yourself. If your LLMD does not address your pain adequately, then you may want to consider seeing a pain doctor.
I've been lucky in that one of my LLMD's has pretty much given me an open prescription for Norco. Unlike most doctors, I know he believes me when I say that I am experiencing ungodly, hellish nerve pain.
Recently, though, the narcotics have not been enough and I actually just made an appointment with an osteopath that has experience working w/ Lyme patients in pain management. You may really want to ask around on the board for a lyme-literate pain clinic in your area. I was really fortunate that someone on Lymenet was able to give me a great referral.
Good luck. I'm really sorry that you have to go through this. Please don't feel bad or guilty for asserting your need for pain relief with doctors. It's worth it.
![[Frown]](frown.gif)
I did try to use a donut hole cushion, and though that did stop the tailbone pain while I used it, it made my back hurt, so I never used it much.
![[group hug]](graemlins/grouphug.gif)
![[Roll Eyes]](rolleyes.gif)
![[kiss]](graemlins/kissing.gif)