Can we talk about fibromyalgia?

trekkiegirl

So this is what I will most likely be diagnosed with. The rheumatologist I saw wants to run a few more tests and x rays, but I also just found out that my mom has it, which makes me much more likely to be diagnosed. And as a child I had juvenile migratory rheumatoid arthritis, which is also linked to probable diagnosis of fibro. My symptoms are: Constant fatigue even when I sleep over 8 hours (like even sometimes 11hrs on a weekend), muscle and joint pain with no inflammation or infection (blood tests always come back perfectly normal), pin prick and tingling sensations in random spots on my body, brain "fog" and trouble processing and/or remembering things, shortness of breath, dizziness, and like 10 more things - none of which are ever explained by blood work,x rays or ultrasound.

Since a few people already posted on my WIW recently about it, I'd love to talk to those here who have been diagnosed with it, or know anyone who knows someone who has it. I do personally do know one person who has it, but her husband is currently dying of a very rare cancer right now (my husbands best friend) so she's not really up for conversation lately.

10 years ago

Off Topic

12 replies

Latest reply was from SandyG

trekkiegirl

Veteran

Rachylou mentioned IV vitamins, has anyone else tried that?

Keturah mentioned she also had been diagnosed with Hashimoto's thyroiditis, which has many similar symptoms to fibromyalgia. I'll ask my Dr to run some tests for that next I see him. I believe I have had my TSH levels tested and they were in normal range, but not the hormone test.

Neelie mentioned that her husband found some relief by going gluten free. I do notice that when I have less carbs in general I feel better. I did get tested for celiac disease, but that was negative. Since fibromyalgia characteristically presents without inflammation, I think a gluten sensitivity is more likely than gluten having a direct correlation to fibromyalgia symptoms, but I'm certainly willing to try anything that will avoid compounding symptoms!

Old Chic mentioned that an anti-depressant worked for her, and I think that might be the way to go for me... if diet and supplements aren't enough. My symptoms do include some drastic mood changes as well, which could be partly due to a psychological/emotional response to the discomfort, but also maybe partly because of hormonal shifts.

Anyone else have similar symptoms or experiences they could share, or remedies that have worked for them? Thanks in advance!!

10 years ago

texstyle

(website)

Veteran

Hashimoto's thyroiditis does indeed have many of the same symptoms and often goes undiagnosed. You will need a full thyroid panel (T3, T4, and others) to know for sure. Most non-endocrinologists only test TSH which is not the best indicator. If you do have low levels of these hormones, I hope you will ask about Armour Thyroid instead of synthetics which from my family's experience (and many others I've spoken with) don't work very well at all.

Did they test your B12 levels and Ferritin too? Both are commonly low in thyroid disease.

I take a lot of supplements and have all my life so I'm not sure I can give any specific recommendation as it's something each person needs to research for themselves due to diet, lifestyle, genetics and other factors. I do take Armour Thyroid and have for many years. Before that I would wake up fatigued after a full night's sleep just like you mentioned.

10 years ago

Sarah Kay

Active Member

I don't have fibromyalgia, but I do have Hashimoto's, which you mentioned above has similar symptoms. Exercise is so, so, so important to my feeling good. It doesn't have to be overly strenuous - even gentle yoga workouts are enough to make a difference. When I exercise consistently, I have more energy, my mind feels sharper, and I just feel better. If a skip a few days, I notice the difference.

Sorry I don't have anything more specific - I hope you can find some relief soon!

10 years ago

Anonymous

I don't have fibromyalgia, but I do have osteoarthritis and sciatica pain, and the Gabapentin makes me feel tired. I was tested and told I don't have rheumatoid arthritis, which is a relief, but I've often wondered if I have fibromyalgia because there are days when my body literally hurts all over. I don't have the tingling, though. My mother did, and had to have vitamin B and iron shots because her system couldn't absorb them the normal way. I've been tested for that, too, and I'm fine on everything--even Vitamin D, which I was told is great because it's very common for people to have low levels of D. Because of my slowed metabolism, I am thinking about having my thyroid checked again. My DH just went on thyroid med after years of feeling lethartic, and he says he feels like a new man; a lot more energetic, and his heart rhythm (he has A-Fib) has gotten a lot steadier. I don't know what to say except that I really feel for you and hope you find some answers. The worst part, IMO, is not knowing what you're up against. Once you know what the problem is, you can deal with it.

10 years ago

Butterscotch

Active Member

I have the aches and pains but fortunately not the fatigue. The Dr thinks it's fibro (no test to say for sure). I've found that hydrotherapy helped but what completely got rid of the pain was a juicing/clean eating diet. Unfortunately, I can't seem to stick to it.

I went to a kinesiologist last week who has said I have leaky gut/candida overgrowth. Basically all the toxins leak out of my gut and that's what gives me the pains. I've done some reading up on it but I'm still confused as the medical profession don't believe in it. However, I have many of the other symptoms and the juicing/clean eating diet cut out all the foods she mentioned so there may be something in it.

10 years ago

Caro in Oz

Veteran

Agreeing with texstyle. It is very personal. For me (I'm hypo-thyroid) changing my diet - no wheat, few grains at all, no lactose has really helped with the brain fog, painful joints etc.

10 years ago

Summer

Veteran

Sorry you're having to deal with this, tr3kkie. I don't have any personal experience of this, but I have a relative who suffers with the condition, and know how debilitating it can be. I hope you find the help you need.

10 years ago

Veteran

So sorry to hear you are suffering. Exercise is my recommendation too. I contracted some unidentifiable virus last spring. I had moderate hearing loss in one ear (this is how it started), months on prednisone, chest pain, and pain down both legs. I'm still suffering from nerve damage from the knees down and some days are better than others. But I started swimming in January and I believe it is helping. I may work up the energy to find other treatments. So...I encourage you to keep on searching, and asking, and trying. That's what my father tells me and he knows from experience. Be persistent! Medicine and treatments changes, evolve, and advance. I'll be following this to see what I can learn. Thinking of you. One day at a time.

10 years ago

trekkiegirl

Veteran

The last couple days have been really bad with fatigue. I've had more dairy than usual, which I'm not supposed to have at all (lactose intolerant and milk protein sensitivity) so I wonder if there's some correlation there? Joints have been a bit more stiff and sore too. Good news is that I am doing the x-rays and blood work tomorrow, and have an appt with the rheumatologist 4/3. That was the earliest I could get in without taking off work.

10 years ago

texstyle

(website)

Veteran

I agree with exercise as being really key. I would start with a change in diet. Sometimes it takes a major shift to see results and the shift may need to go on for at least a few weeks, though some people see improvement in just days. Giving up alcohol (if you drink) for at least most of the week is probably a good idea as it's very hard on your system. Maybe if you need to have something have a little red wine. Organic if possible. And not sweet.

I find that I need a lot of protein while for others it may be hard on their kidneys. I'm not a big fan of eating meat (but I do because of low iron). I try to incorporate plenty of lentils, garbanzos, black beans, avocados, whole grains (I'm not gluten sensitive). I can't eat many nuts due to a weird sensitivity to them but I do eat seeds like sunflower, pumpkin.

I have done a vegetable juice/broth cleanse for a week before but I have to admit it didn't make me feel great. Some say your body detoxes and that can feel kind of awful but the results later are supposed to be good. I can't say for sure.

Pre-biotics are supposed to be good to get you back in balance.

I'm an advocate of bone broth - if you can get all natural bones to use. Or just cooking slow stewed meats on the bone - beef roast with bone, chicken with bone and eating plenty of the broth. So many minerals and that seems to be what most people are lacking.

10 years ago

Gigi

Veteran

I have a friend who has fibromyalgia. I haven't talked to her in several years, but I remember her saying that exercise was absolutely necessary for her. It required a LOT of exercise to keep the symptoms at bay, if I recall--something like two hours a day.

I haven't read all of the above replies, but I see that texstyle mentioned protein being hard on the kidneys. I found out through a lab that I am not a good protein digester, and so my doctor recommended that I take yucca stalk (there is an inexpensive version made by the company Nature's Way). I think that yucca binds to the waste products of protein metabolism so that the kidneys don't have so much work to do.

I'm sorry that you're having so many problems. I hope you can find some solutions for symptom management.

10 years ago

SandyG

Veteran

My BF sees a rheumatologist so here are the recommendations. Daily steady state exercise (walk, swim) to lubricate the joints, with 3x week 'giving it gas' as in increasing intensity 30 second intervals with 90 second low intensity recovery, but keep moving the whole time, do 8 -10 reps. See http://www.joanvernikos.com for general healthy living.

My friend's diet causes her symptoms the next day. She can end up dangerously low in vitamins and minerals. Malabsorption and a body glitch perhaps. She supplements with RAW kinds of vitamins and minerals and has tried various diets.

In my reading I've found similar symptoms from the conditions of FODMAP and pyroluria, if you want to browse outside the medical specialities. It's the wild west, but I found some pieces of information that made a difference in my own health (arthritis and chronic pain) as well. Good luck.

10 years ago

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