I just had fibromyalgia added to my list of AI's. Anyone else?
I have it! It is the least of my worries though. Sjogren's upstages my fibromyalgia most of the time.
My dr keeps telling me I might have it as my symptoms match up but I don't have a definitive diagnosis of it.
Yes, that was my first diagnoses at my first rhuemy appoint. The next appoint my blood results had come back with Sjogren's. I find it hard sometimes to know if my symptoms are one or the other...
I have fibro too and never know if I am hurting from it or Sjorgrens. How do you know?
yes, me too.
I have had it for 18 years at least and now with being treated for Sjogren's and the Neuropathy added sheesh. I don't know which way is up or down anymore and which is causing the pain. ??? I don't think the doctor's know either.
SookieB
You can add me to the list. No wonder I don't like lists. ;D
susanep :)
I went for my first rheumy appt 2 years ago for possible SLE and walked away with SjS and
FM. I had never heard of either! Only now getting a feel for what is what when I hurt!
Good luck
Sarah
yep- me too :(
i never know whats causing what- i just try to find what helps the pain or issue.... :o
fibro is nasty and painful- but as of yet is not formally recognized as an autoimmune disorder or disease.
It will in time I am sure.
Quote from: cargillwitch on April 02, 2013, 07:16:44 AM
fibro is nasty and painful- but as of yet is not formally recognized as an autoimmune disorder or disease.
-
and it shouldn't be considered an AI in my opinion
I was diagnosed with it in 1980. Later found that most of those symptoms were really Lyme and babesia infections. Much of my pain from FM left after treatment and the rest of the muscle pain left when I went gluten and dairy free.
Fibro was added to my long list also.
jpd
My understanding is that FM is not autoimmune but frequently occurs with SLE, Sjogrens, RA etc... And it can be very painful and debilitating. Thankful I don't have it!
Nancy
Me too. I was originally diagnosed with just fibromyalgia
When I got the Sjorgren's diagnoses, he said not fibro.
Now the diagnosis is Sjorgren's, UCTD, Celiac's and fibro.
I have mostly organic foods and foods with no more than 5 ingredients. It helps a lot.
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.
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?
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
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!
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.)
Quote from: bella2 on April 03, 2013, 08:18:02 PM
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.
Thank you, Skylar. I appreciate this information. I am excited to learn more about this diet.
Bella