posted
Does Lyme cause this or is this something else? My tailbone is constantly in pain. I don't know how to fix it.
Posts: 618 | From NC | Registered: Oct 2009
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posted
I don't know if Lyme causes it, but my mother had "coccydynia" for years and went from Doctor to doctor w/ no help. She even tried alternative therapies. She finally had her tail bone REMOVED, big mistake because it did not get rid of her pain and she now has terrible muscle spasms that jerk her whole body and cannot lay in a flat position without this happening.
I have had slight tailbone pain (on and off) from sitting in a certain position for too long, but it always goes away.
but if it were constant pain I would try a chiropractor, a good one, and an osteopath, for sure.
Posts: 631 | From the south | Registered: Nov 2008
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posted
I know an *excellent* chiropractor in NC. If you're interested, maybe you're nearby.
Posts: 631 | From the south | Registered: Nov 2008
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posted
Could it be arthritis? I had terrible pain in the tailbone and it turned out to be sacroiliitis-- inflammation in the sacroiliac joint. This was years before any Lyme diagnosis for me. It actually came at the end of a pregnancy and right after a really bad gastroenteritis.
It was knocked down by a cortisone shot from a rheumatologist-- this was 20 years ago, long before I had any concerns about infection as the cause of arthritis.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
I haven't had an MRI on that part of my spine because my severe pain has always been in my upper spine into my cervical spine.
The tailbone pain began months ago out of the blue. I am now wondering if it coincided with me starting LDN?? My bladder issues started at that time too.
I guess I should have an MRI done just to rule out structural problems/damage.
Posts: 618 | From NC | Registered: Oct 2009
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posted
Am I right that you have had a lot of joint pain/ cervical pain/ arthritis type symptoms?
The cutting edge research points to the idea that arthritis is related to an immune system response that is frequently triggered by infections in the gut, or disruptions in the gut bacteria.
Are you seeing an LLMD? Does he think you also have arthritis?
If you are interested, my doctor in Virginia is both a regionally well-known LLMD who was in Under or Skin and is ILADs educated and is ALSO an rheumatologist.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I have had awful problems for over a year now with pain in the tailbone area that makes sitting uncomfortable at best, excruciating at times. For years before that I would have episodes, often lasting about a week of a numb, squashed feeling when sitting, but before it always went away.
I have seen a London-based top chiro recommended on the coccyx.org site (www.coccyx.org) by many people and at least I discovered through his digital standing X-rays that I do have various spinal problems, especially in the lumbar area, with spondilo, a completely 'blown disc' , sacroiliac problems,sacrum very stiff, coccyx almost fused into a rigid position that he felt was sticking into me when I sit. The pudendal and sciatic nerve is also affected.
He was very deft and certainly improved my posture in my lower back, but over 8 visits, the pain I felt when seated did not make a consistent improvement. I could not keep travelling to see him for various reasons.
Later, in November, I went to London again to a top osteopath for a second opinion and he seemed to think that the pain was not coming from the coccyx itself, that an internal adjustment was not the answer for me, and that treatment of the other back problems would probably help the pain. He put me in touch with a local osteopath he had taught, but I was still not noticing improvement. To be fair, I stopped treatment early more because my tummy problems were causing so much anxiety when having a treatment.
My point is that tailbone pain is very hard to diagnose properly: in my case, 2 top people came up with different diagnoses. Some people really do require an internal adjustment to the coccyx, but for this, you need someone experienced in diagnosing and performing this manoeuvre.
Because the intensity of pain varies a lot, I am inclined to think that a lot of it may be Lyme -related and the osteopath certainly agreed that Lyme would make me very sensitive. We all know that , apart from the arthritis caused by Lyme (and age!),the bacteria often cluster at the weak points of the body, injury sites, scar tissue etc.
I embarked on the Cowden protocol to see if that would help my condition, including the tailbone/ lower back pain. I also rub essential oils into the lower back and coccyx area (especially oils with analgesic properties) and am doing some basic Foundation Training stretches as advocated by chiro Eric Goodman (see YouTube or on Dr Mercola's site).
Other things that help me to deal with the situation is that I have a coccyx cushion in 2 parts that hinge together (from C.S. Ergonomics). It has handles, so you can carry it around easily like a case. This helps, but does not solve the problem. I also find it helpful to use one or two squeezy tennisball-sized balls that are meant for stressed executives or people exercising their hands and wrists: I place them under my buttocks in various positions that lift the tailbone off the chair. People have got quite used to me getting up and saying things like, 'Can anyone see my balls?' Or 'My balls have rolled under the table.' Humour helps to stop embarrassment!!
By all means see a really good chiropractor or osteopath, preferable one with easy access to digital X-rays and MRI (I still haven't had the latter), preferably someone who is skilled at diagnosing when a tailbone needs adjusting internally in case that is warranted. Getting a correct diagnosis is the real problem, because a lot of pain is referred pain. Good luck and sorry if I gave too much information!
[ 03-23-2013, 12:56 PM: Message edited by: ukcarry ]
Posts: 1647 | From UK | Registered: Nov 2008
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Thanks for the super informative and helpful post! Your humor did not get lost on (go unnoticed by) me. The "balls" (tennis) reference surely made my morning!
As someone who also suffers with a lot of lower back, sacroiliac and coccyx pain, I'm certain that others with similar issues will also find your post incredibly beneficial.
You've PM'd me on another thread before, and I just want to mention that I find your posts extremely thorough (if not downright 'educated'). Thanks again for so openly contributing to this topic.
Best to you! Lymebulldog
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
So kind of you to say such nice things, Lymebulldog! Hope you are having a good weekend, All the best, Carry
Posts: 1647 | From UK | Registered: Nov 2008
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
Coccyx pain was one of my worst during the first couple of years of Lyme. It was totally eliminated as I started to take care of dental infections, heavy metal toxicity, and parasites who are holding on to the toxic metals and chemicals.
I am completely free of that pain and have been for years, though I am still getting rid of toxic metals, mainly mercury and lead from other body areas.
MMS is taking care of most of the risiduals now.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
quote:Originally posted by marypart: Am I right that you have had a lot of joint pain/ cervical pain/ arthritis type symptoms?
The cutting edge research points to the idea that arthritis is related to an immune system response that is frequently triggered by infections in the gut, or disruptions in the gut bacteria.
Are you seeing an LLMD? Does he think you also have arthritis?
If you are interested, my doctor in Virginia is both a regionally well-known LLMD who was in Under or Skin and is ILADs educated and is ALSO an rheumatologist.
I agree with this 100%. I was having horrible pain in and around the SI joint that was either made worse by the antibiotics I was taking for Lyme or not helped at all. After getting a food allergy panel done and avoiding the known triggers I began to see a reduction in my pain. But what made a huge difference for me was taking digestive enzymes. I have not had any pain since starting these. A shop owner at a health food store said to me that good health begins in the gut and I now know what she meant.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Thank you all so much for the information! I have some digestive enzymes - I can try this first. Yes, I do have a lot of arthritis, cervical spine issues. My most severe Lyme problems are neurological though abd I have lived with very severe nerve pain in my upper spine for years. It is finally easing up and I have days with no nerve pain at all.
I was thinking about acupuncture, but I guess I should find a good chiropractor too.
It's strange that it started long after I started treating for Lyme. I just wonder if LDN is causing it. Sometimes meds can cause back pain or other pain.
I can feel where it hurts - it is the very very tip of the tailbone.
I still have parasites to treat. I am going to ask my Dr about that next.
I do see the well known LLMD from UOS in DC, so I am great hands. I actually forgot to ask him about my tailbone pain last visit because my babesia and neuro symptoms had come back and were overwhelming at the time.
Thank you again for all the information!! I'm going to try the balls technique! Posts: 618 | From NC | Registered: Oct 2009
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I forgot to say that I did read a comment by either Dr C of the famous herbal protocol or Dr K, can't remember which, saying that many people with Lyme have in the past fallen on their tailbones or injured them in some way.
Posts: 1647 | From UK | Registered: Nov 2008
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posted
You may want to look into Piriformis Syndrome. The Signs and Symptoms are:
Piriformis syndrome usually starts with pain, tingling, or numbness in the buttocks. Pain can be severe and extend down the length of the sciatic nerve (called sciatica). The pain is due to the piriformis muscle compressing the sciatic nerve, such as while sitting on a car seat or running.
Pain may also be triggered while climbing stairs, applying firm pressure directly over the piriformis muscle, or sitting for long periods of time. Most cases of sciatica, however, are not due to piriformis syndrome.
If this sounds like you, the best thing I've found is doing Piriformis stretching exercises two to three times a day, alternating ice/heat therapy, and massage. I'm told it will take a long time - months or more to heal. I'm in my fifth month.
Posts: 217 | From Earth | Registered: Feb 2010
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posted
I've found that a good chiropractor can relieve this discomfort if they understand the lower back/pelvis well.
Posts: 13134 | From San Francisco | Registered: May 2006
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