Fibromyalgia? - Abilene,KS

I could write a book on this!

I diagnosed myself before my doc did - but I didn't tell my doc what I thought I had. I waited, to be sure...

I am almost completely gluten free. I also try to eat paleo. I can tell you, it helps tremendously with the IBS and headaches - it doesn't do a thing for the burning pain, aching knees, stiff neck, etc. My neck hurts so bad sometimes I cannot turn my head all day.

I take mucinex, and that does seem to help with the pain. I also sit in my jacuzzi tub when the pain is unbearable.

PM me, I have lots I can share. I see a rheumatologist in addition to my general practitioner. I can share with you the pertinent questions to ask and what to do if you are diagnosed.

My mother has it - she has suffered from it for years. Now we finally know what it is.

I have every symptom. I "discovered" what it was when I googled "why does my leg feel bruised when I put on lotion?!" I had never even heard of fibro until then.

My symptoms:
-IBS
-anxiety
-waking in the middle of the night for no reason, despite exercise, no caffeine, winding down properly
-very stiff joints, ankles don't want to turn over properly sometimes, knees ache terribly, burning pain in shoulder blade area, pain so bad where the neck connects to the head I can barely touch it
-headaches
-intollerance (but not celiac) to gluten
- intollerance to anything spicy or greasy - I must eat very bland
- Severe pain in neck/spine when I put my head down to look down
- all the tender points except the chest area - if someone presses on the point on my hip, I could vomit from the pain
- chronic fatigue despite adequate hours of sleep at night
- extreme stiffness if I sit in one position more than an hour or so ( I am literally limping like an old lady stiff)
- extreme reduced tolerance for light weight training/exercise. If I lift 10lbs for 20min, I will sometimes wake up not even able to lift my arms. I still run regularly (@ 10 miles per week) despite my pain, because it really does seem to help (well, slow jog, like a 9.5 min mile!)
- sensitivty to chemical odors - hubby calls me a bloodhound
- jaw/facial tenderness - so much so I went to the dentist thinking I had a cavity in a tooth on the top row....nope, just the fibro. I couldn't believe it.
- numbness/tingling in hands and feet - esp during activity or sleeping. When I run, my right foot and right arm tingle the entire 3-4 miles. Miserable.

You can live with this - like I said, I still run, work full time, play with my kids, maintain a household. I will say, I am really really hurting most days. But I eat super healthy, exercise, stay positive and deal with it.

Please feel free to PM me - and please don't a) assume you have this yet and b) freak out if you do. =)

I suggest you go back to your doctor. Diagnosis of fibromyalgia is a lot about ruling out other conditions. My primary care doctor tentatively diagnosed me with fibromyalgia. I also have pain as the result of several whip lash injuries. I went to a chiropractor specializing in fibromyalgia pain. She found that I didn't respond to specific pressure points found with fibromyalgia so I don't have it.

At the time I was having so much pain my life was very stressful. Once I resolved most of the stress my pain lessoned considerably. I've found that regular exercise helps alot. I also went to Kaiser's sleep clinic because I wasn't sleeping well. They ruled out apnea and prescribed Trazadone. I've slept well ever since without having to always take the pill.

I still have painful muscles because I tense them when I'm anxious. My joints used to hurt but no more. Exercise and the ability to relax while asleep has made a big difference.

I am not sure what exactly you have going on , but I will tell you that I recently started selling Plexus Slim products. I do not personally take it for Fibromyalgia (assuming that is what you have) however I take it for keeping my blood sugar levels maintainable. I have had many people come back to say that it does help with the pain of Fibromyalgia. It is a once a day drink that you consume. It tastes like a Crystal Light, It is natural with different plant extracts and antioxidants. Lots of people swear by it. It may be something you could look at. It just has so many benefits to it. Its healthy! Feel free to check out my website and send me an email if you have any specific questions.There are testimonies on the website it you want to find out specifically what it has done for people with Fibromyalgia.. plexusslim.com/andreaLduncan

Diagnosed this year and have had for over 10 years. For me, it is severe hip / leg pain but there are localized areas that affect many and paid can be moderate to severe. My friend became a vegetarian and says it helped. I was tested for a ton of stuff including arthritis and the only thing that came back was being low in Vitamin D. Most who suffer from Fibro are low in Vit D. I now take a D supplement (Rx) and have an Rx for pain pills (Tramadol) which I used occasionally. A major thing for me was sleeping. I hurt so I tossed and turned all night and as a result have chronic fatigue. Started taking Tylenol PM and it has helped greatly. Once you start sleeping soundly through out the night, you wake up feeling so much better. My Dr went thru medical history and learning that the pain has been chronic for multiple years was able to determine it is Fibro (once we ruled out Arthritis and Thyroid) I just turned 36. You only need to see a Rheumatologist (sp?) if you have arthritis because that is what they treat. Before you freak out I would see your dr and get a check-up and go from there. If this has just started I wouldn't think it's Fibro - but I'm not a dr and don't play one :-)

I've heard of people getting rid of all symptoms by going paleo/gluten free.

Blood tests for tick-borne infections would be a good idea.

Rheumatologist - they're good and who is diagnosed my fibro however don't expect miracles to be worked. I don't list the symptoms because they are varied and in my experience change over time. I've been diagnosed for a year or so and have had it for over 10. I've learned to manage and live with it after taking various meds that, for me, did nothing.

See your primary if needed to refer you to a rheumatologist.

Hi Lareesa,

I agree with Marda that you need to rule out other conditions. My first suggestion is to get to a baseline so you can compare and look at symptoms. Sometimes when doctors diagnose they don't have all the information (e.g. What you eat, what you're exposed to at home, at work...).

A total detox of your house and your body will get you to a point of diagnosis. Your environment needs to be as "clean" as possible. That doesn't mean cleaning in the traditional sense. Dirt is not toxic. Chemicals sold in most store are. Residues are always left on surfaces and continue to outgas. Chlorine bleach can remain for years and does massive neurological damage (chlorine gas was invented for neurological warfare). Mix that with almost anything else, say an ammonia residue, and you have a toxic cocktail.

I don't believe all fibromyalgia is misdiagnosed but I do believe it is over diagnosed. Chemical toxicity has the same symptoms and can be fixed...easily and inexpensively. I detoxed my home 10 years ago and my ADD/ADHD daughter had her diagnosis removed.

If you want to know what I did, I'd be glad to walk you through. Let me know.

Hope this helps,
M.

Had a response and then saw that you had alrady covered that base.