Hi. my name is Debi. I am glad to find a site that I can discuss things with people that have struggled with similar issues.
Over the last year I have been sent from doctor to doctor with tail bone pain that doesn't seem to have an answer or resolve. I feel as though I am sitting on a hot poker. It started with lower back pain that I have been pretty much struggled with for most of my life. Although, 10 yeaars ago I got a flu that the doctor treated with antibioltics. The back pain was so bad that I couldn't touch my toes, all of my joints ached and I thought I would freeze to death. When the flu symptoms left I was still so, so, so cold that my fingers under my nails would turn blue and my lower back ached. I live in Florida and kept going to the doctor who would say, "You have hypothermia." My continual question was, "why, it is 95 outside". I also had chronic constipation. The doctors have had no answer despite many blood tests, colonoscopies, etc, etc. Two years ago I went to a naturopath who said that I had lyme disease years ago that was not treated. The tests he took showed it and he treated me with herbs. Many symptoms left, but I was told that it could cause neurological problems. Anyway, about a year ago I started having tail bone pain that was like sitting on a hot poker. Over the last year, I have had a pelvic MRI and MRI of my back. I was told that I have tarlov cysts, but they don't cause pain. I had three ct scans, several x-rays, pelvic exams, colonoscopy, colon transit study, and have been moved from gastronenterologist to osteo doc to neurologist to gynecologist. No one can find a reason for the pain. The CT scan accidentally showed that one of the cysts burst and I am having a hysterectomy for some other issues. The doctor doesn't think that any of it is the cause of tailbone/back pain. Has anyone out there struggled with any of this, do you have any kind of insight or have you had any good results with treatments?

Hey, Debi. Perhaps you should try to get a referral to a rheumatologist. There is no rhyme nor reason to fibromyalgia. Seems that not one of us is alike. Maybe you should be tested for that. For the last 20 some odd years, I have been prodded, poked, and had numerous pictures of everything I have...and a few I didn't know I had. At first, they found that I have numerous herniated disks...one pressing on the spinal cord. Years later, they came up with fibromyalgia, and I have been treated for that for years!!! The last discovery was MS. I am treated for all three...but, like I said, it took more than 20 years to get all of the diagnosis'...and although the pain is less, it is still with me. It costs a lot to have everything checked, but fibro is one to check.

sally

I have problems with my tailbone as well. I cannot sit in a tub because of it. I also have problems with doing some PT excercises when it deals with going along the spine from top to bottom....extreme pain.
Not sure why it hurts just always has. Nothing seems to make it go away just not to do those things that cause pain.

Hi,

Take a look at Sacral & Gluteal Pain specifically Levator Ani and Obturator Internus at:

http://www.triggerpoints.net/_sgt/m1m3_1.htm

These Trigger Points respond well to hands on therapy by a trained PT, Myofascial Trigger Point Therapist, a specially trained massage therapist.

Sometimes you have to go through the back door to reach the Obturator Internus.

Good Luck!

Get a band test with IGENEX Lab for the Lyme and co-infections. I had been dismissed in 1989 after turning in an engorged tick and told don't worry no Lyme in Texas. Have had many surgeries to include ruptured aneurism of the brain - multiple lipomas. One of these tumors was right of tailbone and was never detected by catscan or MRI It finally grew to the iliac crest, and through the SI joint. Lyme disease untreated leaves our immune system depressed and CMV, tumor necrosis factor rises, All the herpes viruses activate. I was so surprised at how carefree you mentioned possible Lyme. I have lost the sight of right eye, had brain rupture, recently having seizure disorder, have had upper spinal fussion and am preparing for a cage procedure of lower spine because of damage from Lyme. MS, AlS, Gulf War Syndrome, Chronic Fatigue and Fibromyalgia, Lupis, Alzeimers are just a few of the diseases that have in many cases been traced to Borrelia (Lyme). The IV therapy that I had brought me back and out of the wheelchair and gave me the ability to speak and think again. The average test (Elisa) misses the Borrelia. Run don't walk -- get the band testing. Thousands of people go undiagnosed until this horrible disease has invaded all body systems. Get on the internet and READ about this. Might just save your life.

Thank you so much for your information, especially regarding the lyme disease. I was diagnosed with late stage lyme diesase that was left untreated and when I went to the neurologist i showed her the results and asked her if this could be the result of it. Since the doctor that diagnosed me is a naturopath, it seems that medical doctors don't like to listen to his results. I am going to ask to be tested again. Thanks again.

Hi Debi,
Look at these guidelines that include the symptoms and treatments for Lyme Disease.

http://www.ilads.org/burrascano_0905.html

I could not agree more that if you were dx'ed with Lyme Disease and you were not treated, it is very likely it is the cause of your pain. There are not very many doctors in the southern states that have a true working knowledge of Lyme Disease as it is considered a problem in the Northeast but, it has been found in every state in the US.

I am in treatment for chronic pain because of Lyme Disease that went undetected for so long and I lost my career due to it. Pain is a major component of Lyme Disease. Go to this website that is a professional organization of people who are knowledgeable and treat Lyme Disease. DO NOT, and I repeat, DO NOT let a doctor tell you that you don't have it because your tests are negative. Lyme Disease is made via a clinical diagnosis and that means the doctor takes your symptoms in account when making the dx, not just going by tests.

Listen to Tangye5...this is a person who knows what they are talking about. I had seizures, completely lost my memory and was like an Alzheimer's patient, has daily migraines and body pains so badly I could not function at all.My arms were in splints due to the pain and yet, I was told, we can't find anything wrong with you, you must he working to hard. My fatigue was so profound I had to stop working and prior to stopping work, I would fall asleep in mid-sentence and my head would just drop to my desk or PC.

You must get the Western Blot test and ALL THE BANDS must be reported(this is explained in the treatments guidelines I gave you the link to above.)
There is a website where you can find docs to treat LD. I will go find it and come back and add it to this. Please feel free to email me about anything. Like Tangye5, I was bit in 1989 and not dx'ed until late 1991 and to this day, I have problems and still cannot work. You have to get yourself treated with antibiotics, not go to a naturopath. This is a very serious disease and if you really want to get superb treatment, you may want to travel to New Jersey, New York or Connecticut to at least get started with a doc who has treated alot of cases and then the treatment can be taken over by your primary care doc. Don't flip if you find out you will need intravenous antibiotics. I had to do that several times for months a time and I did have pain so badly in my back it was unbelievable and now that is completely gone due to antibiotic treatment.

I wish you the best and am happy to help in any way,
Diandra

Debi,
This the website that can help you find a doctor who may be knowledgeable about Lyme Disease but, finding a doctor with alot of experience with Lyme Disease in Florida is not going to be easy. Again, I suggest, as your time and financial resources allow, I suggest you see someone very experienced in the Northeast. If you decided to do that I have some recommendations for you.

Diandra

http://www.lymediseaseassociation.org