Fibromyalgia Anyone?

Updated on December 20, 2011
K.R. asks from Chicago, IL
12 answers

I have (FINALLY!) been diagnosed with something! I know it sounds strange to be happy about an illness but I have been miserable for so long that I am just happy to not feel like I am losing my mind and instead have verification that the pain I feel is real.

I have horrible and almost constant neck, back of head and lower back pain, and horrible pain in my knees. I am always tired and I use caffeine to help me get through the day. I also have the very fun IBS that comes along with Fibromyalgia oftentimes. I eat a very healthy diet other than the caffeine (I eat lots of whole grains, fresh organic chicken and fish, fresh fruits and veggies, etc).

So, are there any tips or suggestions for dealing with this illness? I am so tired of being in pain all the time. My doc indicates the fibromyalgia is likely caused by low progesterone, if that helps.

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So What Happened?

Thank you for the responses! I am on birth control, Seasonique. But I cannot not take BC. We cannot have any more children right now! And I don't trust condoms only. I regularly exercise and we have a tempurpedic bed. I am not overweight, 5'6" and 120lbs.

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C.N.

answers from Baton Rouge on

If you're on Depo, get off it. I was diagnosed with frbromylagia after bing on Depo for several years, and when I stopped the Depo, the FM went away.

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P.D.

answers from Detroit on

Congrats on getting a diagnoses! It was the same feeling of relief for me when I was diagnosed with an autoimmune disease a little over a year ago.

I would suggest keeping your doc apprised of all of your symptoms, finding a local or online support group, getting plenty of rest and keeping up with your good diet.

ETA: Also, if you check some older questions from the weekend, there was another post on Fibromyalgia, which might help you.

Blessings.

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L.B.

answers from Minneapolis on

The thing that has helped me with my fibro the most over the past 22 years (when I was diagnosed) is my sleep number bed. It really relieves the pressure on my joints and muscles, allowing me to get a better night sleep and feel better in the morning. The second thing that has helped is regular exercise. It hurts at first and seems hard but is really so helpful. I have not been on medication for years because of the combination of my bed and exercise. Good luck!

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J.T.

answers from Victoria on

My very dear friend has fibro. She will tell me through the years random things like her tooth died or a bone just dissolved and dissapeared! Its all really random and very painful. She has been going to a radical doctor that does "oils". She says it helps but what helps her more is the diet she is on. She found out that she is allergic to tomatoes and some other foods. Cutting those out helped her. She also needs to loose lots of weight (as do i ) and the doctors say this will help her with the pain. One fibro fact she told me about was when people touch her its like ten times the average feeling. Like if I shake a hand she feels it like a huge squeeze. Even hugs can hurt. I love her dearly and its just something she has to deal with daily. Her mom also has fibro but the doctors believe that it is not passed down.

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S.A.

answers from Chicago on

My mom has this. She was diagnosed 8 years ago. She has severe pain and fatigue every day. She has tried lots of different medications, but can't stick with them due to the side effects. Her current biggest battle is fatigue. She can't sleep because she's in pain. I feel so bad for her. Their insurance doesn't cover a lot of things that would help her like the PT, biofeedback etc..so that is frustrating too. Check to see what kind of treatments your insurance will cover and take advantage of them.

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M.G.

answers from Seattle on

I just got diagnosed this past Friday myself. My doctor also found that my vitamin D and B-12 levels are really low so I'm on a regimen for that. Make certain your doctor checks your vitamin levels. I've been in pain for over 8 years and for me there is no end in sight. What I've done since Friday is make certain I allow myself time to rest when the fatigue and pain hits me hard. Hope others are able to give you better advice.

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P.H.

answers from Chicago on

I generally feel achy or pain every day. I have learned to live life in moderation-do things in short doses and rest frequently while doing jobs. That's a hard one-for most of us like to finsh and then rest. I can't sleep so I take benadryl and advil most nights and sleep deep and hard but rarely wake up refreshed. We have a temperpeidic bed that helps too. I don't take any drugs except an occasional advil. I get so exhausted sometimes just getting groceries. Blessedly, my husband is usually home when I get home and he brings the groceries in while I rest. I find extreme weather changes effect how I feel. I try to stay warm and I see a chiropractor and a massuse every three weeks. I love hot showers and I make it a habit to gently stretch every day. The pain and aches from fb can be very random-it helps to look at lists of symptoms because they can change. A couple of times I had tooth pain and it turned out to be nothing-I blamed it on FB. Staying informed is helpful. One of the hardest things is talking to other people about it or explaining you can't go somewhere because you are having a flare up. You need to experiment and find out what works for you. Besides the common pressure points, the disorder effects different people different ways and also regularly changes within you. Good luck and I really feel for you. I can defintiley relate.

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J.F.

answers from Bloomington on

My mom had it. She is now deceased (lung cancer on top of it).

She was miserable and always in a lot of pain. Her doctor said it was mostly from "burning her candle at both ends." She also had a bad marriage and 4 kids (3 boys). Her life was hell a lot of the time. She also ate well, but smoked and worked very hard (like a male laborer).

Having low progesterone is also an important link. My SIL is dealing with that now. Her dr. suggested going ON bc.

I would suggest to keep researching this and keep a daily journal of what you eat, when you eat, when you exercise, and how you feel.

I also recall seeing a medication advertised on tv for people with Fibro.

Best of luck to you.... fibromyalgia is real and very mean.

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A.S.

answers from Chicago on

I'm not sure if this is something you want to do or not. A co-worker of mine has fibromyalgia and recently got a shot that puts her into menopause. She said she hasn't felt this good in about 20 years. Good Luck to you. I know from watching her that it can be very painful & miserable.

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H.S.

answers from Chicago on

I'm sorry for your pain, I too wonder if I have it.

As for the low progesterone - I've had that problem for years and the progestins found in the BC Pill are the worse thing that you can do for your body. Look into Dr. John Lee's books and info about bio-identical progesterone. The body likes this kind. I was SO much worse on the Pill. Taking the bio-id has changed my life.

PM me if you need more info, but really, look up Dr. Lee...he pioneered this science.

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E.W.

answers from Chicago on

I have it as well - I was diagnosed in 2008...it felt great to finally have a diagnosis to all the pain I was feeling...all the time!

The thing that helped me best was warm water physical therapy! It's PT in a pool or warmer water than a normal pool (not as hot as a bathtub though). I felt great during that period of time!

Diet helps too - I've found that the more organic you go the better you feel, but if you can't afford it (because it can be expensive) then at least eat a healthy diet like the one you are. Make sure to wash the veggies and fruits with a good wash though - that REALLY helps. Also, cut the caffeine intake - the less I take in, the better I feel and less pain I have!

I also found that the days that I move around and do at least a little bit of exercise (like walking or cleaning a little bit around the house) then I feel better than the days that I just lounge around. Granted there are days when I wake up in pain, so I start those days out by laying on a heating pad for a few minutes and then try to do something small.

I do take pain meds when needed (when the pain is too bad to deal with - and I have a high pain tolerance), but I DON'T take lyrica or anything else like that because I've had some bad reactions to them.

As far as being on birth control - I've been on it for a long time (with the exception of the past 2 years now b/c of the birth of my daughter and now we're trying again), that didn't work for me.

I, too, have VERY low progesterone - so low that when I was pregnant with my daughter I had to take a lot of extra progesterone to stay pregnant...

Please ignore the person who stated that it's a sickness of the devil...I really get irritated that people put stuff like that on here...

J.S.

answers from Hartford on

I have Fibromyalgia. It's been a steady increase of symptoms since I was a teenager that became dramatically worse with each pregnancy. I've had so many various issues and no matter how well I've taken care of myself, including working out and having an excellent diet, things just get worse as the years have gone by. I've posted and blogged about it.

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