Another AI -- Fibromyalgia

[Skylar]

I was dx with fibromyalgia years ago too. But I don't think it's an autoimmune disease. In fact I don't think it's a "disease" at all - rather is just inflammation - painful inflammation that sometimes goes along with other chronic diseases.

I was able to put mine into remission by following an antiflammatory diet - Dr. John McDougall's diet. I didn't expect a radical change in my diet was going to affect my fibromyalgia - I mean I knew this diet would lower my cholesterol and high blood pressure so I could get off those drugs, but a couple of months into following this diet and one of my cats walked on me and I was shocked I had no pain. You know how if something or someone pushes you with a finger or something that area hurts like crazy and the pain lasts for a few hours - well my cat walked on me and I didn't feel anything except his weight. Plus I had a lot of energy and was able to move around better.

[quietdynamics]

I was Dx'd with Fibro after SJS by Rheum.
Similar to SJS it is prevalent in females at a ratio of 9:1; presenting ages 20 -50.
- FM patients showed higher circulating levels of IL-8, IFNgamma and CRP as well as cortisol and NA than age-matched healthy control women
- results confirm an elevated "inflammatory status" in the FM syndrome
-lower (nor)epinephrine concentration together with the lower heart rate suggests a disturbance of the sympathetic activity in PFS patients

Used to be a convenient "dumping Dx" for somatic pain; but now the tender points 'test' is soon to be the 'dumpee' as new criteria is developed. And of course some Drs. did not even use the tender points. Myself...I did not match the tender points; articles point out it was often not done properly...oh well.

The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity 2010  http://onlinelibrary.wiley.com/doi/10.1002/acr.20140/full


Babe... it ain't just PAIN: my sentiment...

Patient variables: phase 1.

Patients were asked to indicate in which of 19 body areas they had pain during the last week. These areas were those previously described as part of the Regional Pain Scale (renamed here as the WPI)

We also asked patients to indicate which of the following symptoms they experienced in the last 3 months: blurred vision or problems focusing; dry eyes; ringing in ears; hearing difficulties; mouth sores; dry mouth; loss of or change in taste; headache; dizziness; fever; chest pain; shortness of breath; wheezing (asthma); loss of appetite; nausea; heartburn; indigestion or belching; pain or discomfort in the upper abdomen (stomach); liver problems; pain or cramps in the lower abdomen (colon); diarrhea (frequent, explosive watery bowel movements, severe); constipation; black or tarry stools (not from iron); vomiting; joint pain; joint swelling; low back pain; muscle pain; neck pain; weakness of muscles; tiredness (fatigue); depression; insomnia; nervousness (anxiety); seizures or convulsions; trouble thinking or remembering; easy bruising; hives or welts; itching; rash; loss of hair; red, white, and blue skin color changes in fingers on exposure to cold or with emotional upset; sun sensitivity (unusual skin reaction, not sunburn); yellow skin or eyes (jaundice); fluid-filled blisters; numbness/tingling/burning; swelling of the hands, legs, feet, or ankles (not due to arthritis); irritable bowel syndrome; faintness; frequent urination; painful urination; pain, fullness, or discomfort in the bladder region; sensitivity to bright lights, loud noises, or odors; fatigue severe enough to limit daily activity; tender lymph nodes; or frequent sore throats. We summed the positive replies to create a 0–56 count of somatic symptoms scale. http://onlinelibrary.wiley.com/doi/10.1002/acr.20140/full

I bolded the ones I have, and most had  attributed to SJS...who knows for sure? When I 'Flare' these are the what I experience.
Neuro tests are showing scans of differences in brains of patients with FS and/or SJS...one day the technology will be there to sort out the quagmire.

Good grief...how do the Drs. sort through any of this?

[bella2]

Skylar,
Can u tell me more about the McDougal diet? I went to the website and several books are offered. What is ur recommendation?
Thanks!
Bella

[Momedic]

Yep, I have it too!  Got the diagnosis shortly after the SJS diagnosis! All I know is I hurt all the time.. either or... which ever one it is... they both hurt!

[Joe S.]

It took seven years to get my first fibromyalgia Dx. Then we moved 230 miles away. Since the new doctors did not believe me or my medical records, it took another 7 years to get a fibromyalgia Dx. When Sjogren's raised its head with a moth on my face, it took a number of year to get that Dx. (It looked too ugly to call it a butterfly and it had round circles in it.)

[Skylar]

Skylar,
Can u tell me more about the McDougal diet? I went to the website and several books are offered. What is ur recommendation?
Thanks!
Bella

I borrowed his books from the library - any of his books has the same program - there is one, the Weight Loss Plan that is slightly more restrictive but all the rest are the same. However he also has the plan for free on his website along with tons of medical information with links to peer reviewed literature. There is an incredible wealth of information and all kinds of help such as recipes, forums for support etc. to make it work.

I can't post the full link here -if you go to his home page at drmcdougall and scroll down the left side you'll find "Free Program Regain your lost health & appearance ?" If you click on that it tells you everything.

Even if you do as much as possible, you'll see some benefit. If you can do it for a week or two 100% you will feel the difference. It did take several months for some of my stuff to go into remission - and I wouldn't be surprised if it takes years for some stuff to fully heal. I remember reading with Celiac's that when they stop eating gluten it can take up to two years for their digestive tract biopsy to look normal  - so I assume that applies to other processes in the body.

He also has info on autoimmune diseases - mostly MS because he is involved in a big research study with OSHU.

[bella2]

Thank you, Skylar.  I appreciate this information. I am excited to learn more about this diet.
Bella