... and i'm at the end of my roops... Please Help!!
Hi oceanluvr, I also have Fibro really bad. I can't take any kind of NSAID's because I am allergic to them. I am 49 and have had Fibro since I was 36, so I have tried a lot of things. I am now on the Duragesic Pain Patch and take 20 mgs of Percocets for break through pain. It is working well for me. I also try to get a massage as often as I can afford to, since my insurance won't pay for them. I also have found going to the tanning bed helps. I know there will be people out there that think they are bad for you, but wear a good sun block. The heat is amazing and it helps so much, especially in the winter time. The most important thing I have discovered is to make sure I go to bed at the same time every night and get up at the same time every morning. I try to always get 8 hours of sleep, but by going to bed and getting up at the same time everyday, it has helped flush the toxins out of my body better. Good Luck
Dear Oceanluvr: I know what you are going through, as I have had fibro from a car hitting me (twice no less to rob me), in 1994. Back then, fibro was a woman's psychosomatic problem for people who didn't want to work, and just wanted to stay home and take narcs legally. They called me a doctor shopper, and I was just looking for a cure for these strange symptoms that no one put a name to, so that I could go back to work. What I am trying to say is that after 16 years of dealing with this insidious disease, there is no right or wrong treatment. It is what will work for YOU. I am now on full disability, and go to several doctors for different treatments. Fortunately, I live near a major university, with a fibro "guru" who has studies and trials to help people with their problems and gives a talk once a year to tell the community what is the newest findings about fibro.
It is thanks to him, that this condition is no longer psychosomatic, but a genuine REAL condition, and there are treatments. The problem is that everyone is different, so that different treatments work better depending on the person. There is no one answer to your question. They have found that narcotics do not help fibro, but I take narcotics due to other conditions that started after the fibro started. I wouldn't be able to function without them.
You may hear about people taking Lyrica, or Neurontin, or Cymbalta, or the old antidepressants, and it depends on the person. I can't take Lyrica. It makes me nuts, and FAT. Yet other people swear by it! Neurontin I call my miracle med, but it causes fluid retention. (There are always paybacks for these drugs!!), so I can only take one 300 mg. capsule daily at bedtime, instead of the 1200mg. three times a day that I used to take! I wish that I could take more, but I have gained over 80 pounds in just fluid from this one medicine, and I never had weight issues like I do now, because of it. I also find that alternative therapies work well for me. I HATE acupuncture, but some people swear by it. I LOVE massage, and it works really, really well for me, but I can't afford it and insurance thinks that is a 'luxury', not a necessity. (If they would only LEARN) Exercise is important, but I have to rest after each time I walk, and I have to walk with walking sticks ( you can find them on the web) to take the pressure off of my lower back, hence the need for narcotics. I also have sleep apnea. Now there is a study that has found that a medicine for narcolepsy and sleep apnea really helps with sleep at night for fibro patients. Unfortunately, the FDA wouldn't approve it for fibro, so unless you have those two conditions, you would have to talk your doctor into prescribing it to you 'off label'. The name of the med is Xyrem and when I go to my neurologist in a few days, I am going to ask him about it, as I never sleep well. Find a doctor who is WELL VERSED in fibro to help you.
What I am trying to tell you is that no one person can answer your question. You, yourself have to go out and actively seek the answers that you are looking for. There is no magic answer for all of us, just different things for different folks. One important thing that I have learned after all these years, is that you have to pace yourself, and try to avoid as much stress as possible in your life. (HA, HA), I know that is practically impossible, but it is true. I got so stressed this past year, that I had pneumonia twice, chronic bronchitis, asthma problems, etc., and I have been fighting to get back my baseline health for over SIX MONTHS!! It is true that stress kills, and I don't want to die. I have too much to live for, and so do you! Good luck oceanluvr, and I hope that I have helped you in some small way. I will be thinking of you. Ellen
I am still working on finding the magic answer myself so I can't offer too much advice but I can say I know exactly how you feel. I was beginning to feel somewhat better myself until my latest "rut". You can read my latest ? and some of my older ones to see what I have been through and tried.
I am happy with the results I have had with pristiq. I am probably having that increased this week to 100mg a day when I go back to my therapist. As far as controling the pain, that is a major problem although I was doing better until they changed the oxy to the new version. Good luck and I would be glad to share any infor between us if either finds something that helps. But it is also sooo true what the other person said about how no two people are the same. Good luck.
I also suffer from severe fibromyalgia. What has worked best for me thus far is Cymbalta plus Celebrex. I'm also depressed so am on Zoloft. I'm at my best when I've been able to exercise at least a little bit each day and then I have a fake sauna that lays like a mat in my little bathtub. I found it online for around $75. It makes my tub a bit like a sauna. When the pain is bad, by itself or after exercising the tub helps a lot. Good luck.
I have had this dreaded, stupid "syndrome" for over 13 years now. It sucks! Eventually, I had to go on a medical leave and then retire before I had planned to do so. I take zoloft for the depression and trazodone & xanex for sleep. Currently, I am eating a whole lot of ibuprofen for the pain. I found this website: www.lowdosenaltrexone that appears to offer some help for all the problems we must deal with. I wonder if anyone has tried the low-dose naltrexone (4.5 mg once a day at bedtime)???
Pacing is sooooo important, but sometimes difficult because when you have the precious commodity called 'energy' you tend to over-do it. Then, you pay the price. I'm aware of this, but I must admit that I don't always listen to the clues that I'm getting from my body. Yes, avoid stress... another one that's pretty difficult.
It took me 2 years to get diagnosed. I was told that it was all in my mind, etc. I researched my symptoms and felt that I had fms. My dr. said it was a "wastebasket diagnosis." Eventually, I got the referral to a rheumatologist who confirmed what I had concluded. There's a good group/blog(?) on about.com for chronic fatigue and fibromyalgia. When you read about all the people who have so many of the symptoms you have, it helps to alleviate the fear that you're losing your mind!
There's a whole laundry list of symptoms that accompany this stupid fibro... I began losing my hair (slowly) a couple years ago... it continues to this day. I wear hats a lot and purchased a couple of wigs--- that I haven't gotten around to wearing as yet.
Acupuncture helped me, but the insurance won't cover it.
Try to take care of yourself as much as you can. (sorry this is so long)
Well I am a guy and among back and neck problems I was diagnosed with fibro after a automobile accident in 2005. I find that gabapentin has helped along with opana and tramadol 50mg for breakthrough for my other conditions. It seems that up until now it was ok with the gabapentin but now just getting up out of bed is ugggg. So a higher dosing may be better. I understand complletly and the answers above I have copied they are very very helpful. Don't give up, there are lots of good people here and you may find the combo of meds that will give you some relief.
oceanluvr... there isn't one answer for everyone. I find stretching very helpful. Keep everything moving. I have had fibromylagia for 20+ years. I have had great docs even though we have moved around the country. Sleep... regular sleep is the most important. Moist heat, bath at night, hot tub etc. also helps you relax. Massages are great but are costly. The pain is with me everyday. I still work full time on my feet 56 hours a week. My days off sometimes I am not able to do much at all. Accept it, respect it, take time for yourself. I am on 9 meds I take at night. Morning can be very ruff... just one day at a time and find something you enjoy that you can do and look forward to. Listen to what your body is telling you and keep track with a pain diary to help judge what is really a bad day. You will be surprized what that diary will tell. It is also good for your doctor appoints. Good Luck!
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