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Ankylosing Spondylitis/Sacroiliitis/fibromyalgia

I am 50 yrs female 135lbs..in 1991 was diagnosed with. ankylosing spnondylitis, & sacroiliitis.
and I also swear i have fibromyalgia also ..after all my life of pain, it finally was given a 'name'
But ever since 5 yrs ago the pain has gotten much worse and so unbearable, have had sciatica few times..and now for 1 1/2 yrs have had the most severe stiff neck that won't let me turn in either direction without pain..which limits my driving due to lack of mobility in my neck.
During night time sleep my pain is so bad, my muscle pain is so severe that it makes me want to get up and go to the hospital emergency.
In the past year, I now have a new symptom of swollen knees, impossible to bend or fully straighten .
I also get burning sensation on the upper portion of my left foot, like my foot has a match lit over it..
My fingers are quite distorted due to my arthritic condition.
My Dr. only prescribes medication & injections which require for me to get blood tests monthly to make sure there is no damage to my liver.
I am very frustrated that I don't think he is fully paying attention to my condition ..
I am now refusing to take any heavy drug medication as prednisone that he has prescribed for me..
I am demanding he take a closer look and Re Evaluation my condition since it has gotten much worse since my original diagnoses of 20 yrs ago...
I have requested either CT scan or MRI ...to get revaluated to make sure there is nothing else going on.
I understand this will not change my situation, but it would sure make me feel better about the prognoses & progress.
I would like more natural healing methods...
At my own expense I have continued On & Off...ongoing accupuncture which has somewhat relieved 'some' pain.
and/or deep tissue massage...

Is there something my Dr. is overlooking, or some other holistic treatmeant I should consider ?

Please help !!

Thank you so much...
1 Responses
Avatar universal

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

Your symptoms sound very musculoskeletal. A rheumatologist would be the most appropriate person to discuss your condition with. I can provide you with some information about burning pain, which is a form of neuropathic pain.

Neuropathic pain has many descriptions that include burning, gnawing, aching, and shooting or lancinating qualities. This type of pain is caused by injury to a nerve. There are 2 types of nerves in our body, large and small. The small nerve endings supply the skin and sweat glands. With small fiber neuropathies, symptoms include the typical neuropathic pain of burning or buzzing or other vague symptoms which start in the feet and hands then in some cases spreading to other parts of the body. An EMG/nerve conduction studies (NCS) (tests done to check for neuropathy) will not show an abnormality, and a definitive diagnosis can only be made with a skin biopsy so that the number of nerve endings can literally be counted. There are other tests of the function of small nerves that can be ordered, such as QSART testing which looks at how much sweat the skin makes, since sweating is in a sense of function of these small nerves. There are several causes of small fiber neuropathy, including diabetes, vitamin deficiencies, autoimmune problems. Medications typically used to treat neuropathic pain include neurontin and lyrica. However, with chronic pain, changes in the pain threshold occur making your body slightly more sensitive to painful and nonpainful stimuli. If this is the case, the treatment will take time. It would include perhaps a consult to a chronic pain rehabilitation physician (to help with the immediate pain relief but also guiding you towards chronic pain relief), physical therapy and massage therapy, and, if needed, psychosocial rehabilitation. It is amazing what the multi-factorial approach will do for patients with chronic pain.

I would suggest you discuss your symptoms with a rheumatologist.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
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