Fibromyalgia Community
Help for Fibromyalgia
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Help for Fibromyalgia

I was diagnosed with fibromyalgia 3 years ago I also have degenerative disk disease. I am 36  yrs. old. I have seen my family Doc, Neurologist, rheumatologist, and pretty much was told that they couldn't help me. I have tried neurotin, Savella & Lyrica. None of these has helped at all, the lyrica I had bad reaction to. the same with neurotin. Also tried cymbalta and was allergic to it. I am on Effexor ER & Xanax and Muscle Relaxers. I am in constant horrible pain, I feel like all the muscles in my body are in 1 giant knot. Do you have any suggestions for me. I can not live the rest of my life like this. I am on disablity, and am limited to any activity. Pleas help me
Traci
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I'm sorry you're having such trouble with your fibro and DDD.  I also suffer from fibro (was diagnosed 12 years ago), DDD and other chronic pain issues.  It can be very frustrating and depressing for surem especially when the things you try either don't help or you have a bad reaction to them.

Some non-medicinal things you can try that sometimes help me are warm baths or showers - not too hot or too cold - I find that extremes in either direction make me hurt worse.  I also quite often use a microwaveable heating pad.  I also find sometimes that resting in bed or on the couch listening to soothing music will help me relax enough until my meds kick in and can sometimes give me a little pain relief.

Some people have found that certain things in their diet (artificial sweeteners, caffeine, chocolate, gluten) affect their fibro symptoms.  I'm not one of them (with the exception of MSG), but you may want to experiment with your diet to see if anything does seem to make your pain worse or better.

I'm also on disability (not just for the fibro) and my activity levels are severely limited.  When you're able, you may want to try some gentle stretching - this may help release some of those knots that you're experiencing - just be sure to not overdo.

Also try to get the best sleep possible.  I know that's a lot easier said than done - it's a vicious cycle - we as fibro sufferers can't sleep well because we are hurting and we hurt more because we are not getting enough sleep.  It's very common for fibro sufferers to require some sort of sleep aid - so if you're having sleep difficulties, you may want to talk to your doctor about possibly adding a sleep aid to your medication regime - whether it be an over the counter one (such as a benadryl type med or an herbal one such as melatonin) or a prescripton sleep aid.  HOWEVER, DO NOT ADD OR CHANGE ANY MEDICATIONS WITHOUT FIRST TALKING TO YOUR DOCTOR.

I wish you the best of luck and if I can help anymore, please let me know.
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I agree with geminigirl. I also have FM and DDD, but have found some relief with the meds. It is too bad you have such bad reactions to the very few meds around that are helpful at all with FM. The only thing I would add is to geminigirl's advice is to put some good old fashioned epsom salts into your warm bath. Epsom salt is actually Magnesium and helps draw out toxins in the muscles
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Avatar_m_tn
I was diagnosed with fibro and degenerative  arthritis 6 yrs ago. I also found out recently that I have obstructive sleep apnea, which only serves to complicate matters even further. I was on Lyrica, but have stopped taking it because of the weight gain. As of now, I am taking Klonopin and and benadryl at bedtime so I can sleep. I am going to ask my primary to help me get off the Klonopin because I just don't like being drug dependent. I also found out that the Klonopin can exacerbate the cognitive symptoms - anyone who has experienced fibro-fog can agree that we don't need any more problems such as those.

I have found out that the way I feel on any given day is directly related to the quality of sleep I get the night before. My insurance company won't pay for a CPAP because I haven't met the deductible, so I have found a compromise for now - a Breathe-Right strip. My sleep specialist says that fibro is caused by sleep apnea, but I have trouble buying that. If it were that simple, then everyone would be on CPAPs. My point is get the best sleep possible. I can't stress that enough. I found out that I can't sleep on an inner-spring mattress. After 5 minutes on one of those things, I'm in excruciating pain. I stumble upon the solution on a camping trip: a simple ten-dollar air bed! These can be adjusted to your preferred firmness simply by adding or releasing air (on the lighter side, if you have a cat, make sure you have an extra bed in case of accidental punctures LOL).

A friend told me sometime ago that saunas will help rid your body of any toxins, but they don't work for me - my body has difficulty regulating temperature, especially when it comes to heat; I came dangerously close to heatstroke after just a few minutes in a sauna, so it's best to know what your body can handle before you try something such as that.

Also, make sure you have a primary who is familiar with fibro and will work with your specialist, if you have one. This is THE most important thing you can do for yourself, and stay away from doctors who say "There is nothing I can do for you." There is ALWAYS something that can be done, even if they do no more than admit they are out of their depth (which some, woefully, cannot do). That's the magic phrase that makes me disappear faster than a box of doughnuts in a police station.

It also helps to maintain a sense of humor and a positive attitude, which is extremely difficult but can make a world of difference when you're in pain 24-7-365. I hope I have been of some help and wish you the best of luck.
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Avatar_f_tn
I agree with all the responses here and I certainly can understand what your are going through I am also on disability. I am on many meds not by choice really but its the only thing that keeps me functioning somewhat. I noticed the drug gabapentin has not been mentioned I find it works much better then lyrica and many other drugs which I have been on. See unfortunately I cannot take any inflammatories at all I take very bad reactions to them all. Has the dr mentioned at all about referring you to a pain clinic to manage your pain as my dr told me its finding the right mixture of meds to control the symptoms along with exercise and sleep which is very important. I have been diagnosed just a year ago however I think I have had fibro much longer along with inflammatory arthritis. I wish you the best of luck and if I can offer any further help just let me know.
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Avatar_f_tn
Hi,

I have fibro, inflammaotry arthritis, Hashimoto's and Chronic Lymes disease. My Lymes doctor deals with a lot of fibro cases and recommended I take epsom salt baths. I used to love taking hot baths but I can't do that anymore due to my nerve endings on my skin hurt badly when they touch warm-hot water.

This doctor told me it's extremely important that I have a GOOD NIGHT'S SLEEP! Last month I started Resterol. I slept like a baby and woke up surprised I did! You may want to ask your doctor about it.

Gabapentin (Neurontin)- I started this last year and it really helps. I'm still very uncomfortable but not anything like I was. I also put on many pounds because of it but it's worth it to me. I had lost 50lbs from being sick and I gained 20lbs. so I'm still ahead.  

Question: Does anyone get pins and needles? (parathesia) I have full body parathesia and even my face.  
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