Fibromyalgia Research

[fibroresearcher]

Hi everyone! I hope you all are having a great day! I am part of a research study for fibromyalgia and the lifestyle factors associated with it. Is anyone interested in participating in it (your name will remain anonymous if you wish)? If so, I will be posting a questionnaire that will take no longer than 10 minutes to complete which will ask you questions about your lifestyle with fibromyalgia, your life before diagnosis, treatments you take, diet, workload, etc. Thank you so much!

 

[jlknits]

I am in my third week of a huge fibro flare! I was diagnosed w/fibro in 1987 and other than digestive issues it has been effective with my treatment having only minor flare ups. I am struggling to walk as my left hip, sciatica are in pain. My legs have even given out when least expected. I have troubles sleeping as the pain is ever constant. I am inquiring about knowledgeable doctors in the Duluth, MN area that can effectively treat my condition. My internal med doctor is great but admits her lack of knowledge when it comes to fibro. I see an endocrinologist also but she mainly deals with my fluctuating weight issues. In the past I had success with a Team Health care clinic in Anoka, MN but my doctor has retired and I do not trust anyone else - as have had bad experiences with chiropractors when they are not specifically trained to treat fibro. The frustration is very debilitating as I am normally quite active. I am also being treated for IBS, hyperglycemia. I can identify what may have caused my fibro
back to the age of 9 yrs old...a car accident in 1957, car rolled and I ended up with the back seat on top of me. At age 16 I fell off a horse and the hoof of the horse behind me hit me in the lower back as I tried to get up. I have a nerve bulge in L4 & L5. At 10 yrs I had a compound fracture right broken arm. At 3 years old I had a double hernia which I almost died from. When I was 30 I was diagnosed with Endometriosis and had a hysterectomy, leaving only my left ovary. I was never put on hormone treatment. In my teen years I had such heavy blood flow at menstrual time that I would have to stay home from school for 2 days til it subsided. Because I was diagnosed so long ago by my MD and a rheumatologist, Jodi Hargrove, in Edina, MN I have tried almost everything out there. I was on Lyrica for a long time, Celebrex, zoloft, but I requested to go off of it. That has worked for me up until now when all hell has broken loose. My current treatment is Duloxitine, Wellbutrin, omeprazole, fiber supplements, Metformin, stool softener, Flonaze, Albuteral when needed - but have not used for years. I take a melatonin and 1 sleeping pill just in the past 3 weeks just to try to get some good rem sleep, but I still wake up hourly, and struggle to get back to good sleep. Last month I asked my doctor to test for SIBO, Hashimotos but never got done. I watch the Summits and heard about an OrgaNIC aCID TEST WHICH THEY SAY MUST BE TAKEN TO CORRECTLY DIAGNOSE FIBRO. What is that? My T3/T4, thyroid do not show up as a problem but I truly believe that it is. I have read 4-5 books, newsletters, and they say about 70 % of people with fibro have an underlying thyroid problem. Is that true? I have had an hiatel hernia surgery in 2018, vaginal interior and exterior prolapse in 2021, many UTI infections at least 2 per year, bladder infections 3 so far this year. I do tend to overdo on my good days and I still have to work on that, but I feel I have to catch up on my duties while I am feeling better cause I know the pain, fatigue, fibro fog, IBs, will return. One other thing I thought was strange was in 1987 I was bit by a lyme tick - went to the hospital and they cut it out of my back but never treated me. Two years later I also was bitten by a tick. I went to the same hospital, they removed it but never put me on an antibiotic. Both bites were confirmed lyme tics. Is that not strange. I have never been tested for lymes disease because of my fibro diagnosis being positive so health issues have always been treating the fibromyalgia. In 2018, I was hospitalized for Bacterial pneumonia for 2 1/2 days, and have been treated 3 thime for Candida. What a history?! Wher do I go from here? Do know anyone in the NW WI/Superior, Duluth, MN area who specializes in Fibromyalgia?

 

[JayCS]

Hi there, and thanks for your interest in fibromyalgia. This thread from February will show you how to proceed....

 

[sunkacola]

I watch the Summits and heard about an OrgaNIC aCID TEST WHICH THEY SAY MUST BE TAKEN TO CORRECTLY DIAGNOSE FIBRO. What is that?

I don't know where you heard of this; I have never heard of it. There is no definitive test for fibromyalgia. In fact, it is most often diagnosed in a process of eliminating all of the other things it could be.

As for finding a doctor in your area, I suggest you do some research online for that, or else start calling doctors and asking them. If you have a pain clinic in your area, you could also try calling them to ask if they can refer you to a doctor familiar with fibromyalgia.

 

[JayCS]

Hi there, and welcome!
All very understandable, that's fibro, isn't it... .

Last month I asked my doctor to test for SIBO, Hashimotos but never got done. I watch the Summits and heard about an OrgaNIC aCID TEST WHICH THEY SAY MUST BE TAKEN TO CORRECTLY DIAGNOSE FIBRO. What is that?

Sounds like you're on the mainstream chemical route, with duloxetine/Cymbalta etc., but are gaining interest in the functional medicine approach? This would then bring you away from meds more and more and more to supps, manual therapy, lifestyle adaptation, mental/relaxation etc. If you haven't tried all the 100s of those then you haven't tried everything out there yet, there's loads more, just they're aside of the beaten track. Starting point before that would be to check @sunkacola's advice post on the basics for fibro here.
An organic acid test is jumping in the deepest end of that, with very murky waters considering its expense (normally no insurance), you need a functional clinician that is well-versed in that kind of thing. Even then
It's got absolutely nothing to do with fibro specifically, it just generally measures what they assume may be wrong with your body and be contributing to fibro or whatever.
In the functional world some see it as the test of all tests, but it isn't a standard procedure, even controversial.
It's a urine lab test that tries to measure metabolism, vitamins, gut function, fatty acids, carbs, neurotransmitters, mitochondria function, oxidative stress, detoxification, inflammation.
But who says it does? None of it is backed up by enough research at all. That's why it's done so rarely. May give ideas, guide a very good doc's intuition, many other lab tests would have to be done, but it's nothing like a "correct diagnosis" of anything at all. And you need that brilliant doc first anyway....

My T3/T4, thyroid do not show up as a problem but I truly believe that it is. I have read 4-5 books, newsletters, and they say about 70 % of people with fibro have an underlying thyroid problem. Is that true?

That's what functional docs assume, again hardly backed up by research. If our T3/T4 aren't in the highest area they say that's not enough specifically for fibro. Here the "optimal" levels were mentioned. They aren't Hashimoto/hypothyroidism, but taking levo-thyroxine (or some prefer the natural T3+T4 version Armour) may help. For me it did boost a little energy, but robbed appetite & weight, so I stopped.

I do tend to overdo on my good days and I still have to work on that, but I feel I have to catch up on my duties while I am feeling better cause I know the pain, fatigue, fibro fog, IBs, will return.

Sounds like you need to reduce your duties wherever possible to keep the flares down, that's our experience...

I have never been tested for lymes disease because of my fibro diagnosis being positive so health issues have always been treating the fibromyalgia. In 2018, I was hospitalized for Bacterial pneumonia for 2 1/2 days, and have been treated 3 thime for Candida. What a history?! Wher do I go from here? Do know anyone in the NW WI/Superior, Duluth, MN area who specializes in Fibromyalgia?

Well, that'd be a load of stuff a functional doc of course would love to delve into, whilst mainstream docs wouldn't care.
The fibro doctors list on our main site (e.g. for MN, for Duluth) is no longer kept up to date, but may give some orientation. And you for instance have the Mayo Clinic in Rochester...

 

[johnsalmon]

jlknits said:
My T3/T4, thyroid do not show up as a problem but I truly believe that it is. I have read 4-5 books, newsletters, and they say about 70 % of people with fibro have an underlying thyroid problem. Is that true?

that may indeed be true however it does not prove an medical association with fibromyalgia. Probably 70% of people with fibro may have underlying big toe problems but again there is no medical link - again 70% of people may vote liberal but that does not prove any thing.

OrgaNIC aCID TEST - does not test for fibromyalgia it was popularly known as OAT, measures the levels of organic compounds in urine that are produced in the body as a part of many vital biochemical pathways. It’s used to check for RARE inborn genetic defects of metabolism, most often in newborns.

 

[ckbmore]

If it's not too late, I would be willing to participate. C. Buttermore

 

[ckbmore]

I definitely identify with your difficulties. Just want you to know that certain of your medications can cause diarrhea. I have had microscopic colitis (detectable only through colon biopsy) as a result of taking Duloxetine, escitalopram, & Lyrica. Each was a separate incident. As soon as I stopped taking the medication, diarrhea stopped within days. Metformin also can cause diarrhea. So, if there is one you think you could stop, it might help with your IBS.

 

[JayCS]

If it's not too late, I would be willing to participate.

Neither the questionnaire nor any info nor questions about the right procedure here were ever posted by fibroresearcher. Altho last seen Aug 9th.
So it's not "too late", there'll be no chance.
(There has been one 'researcher' (@Oberon) who "used the right procedure", but I was then the only one who was actually prepared to do an interview with them. Wouldn't be able to any more tho.)