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Fibromyalgia is life changing
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An_246451 posted:
I was so relieved to have an actual name for this pain, I cried in the doctors office once he told me. All others I'd been seen by dismissed me as just being depressed and here's your RX on the way out. I knew the pain was real. After living with this deep, sharp pain for over 20 years, I still have no family support. My friends have all abandoned me because I just can't make it to thier events. Even a shopping trip with girlfriends is too much. My own husband just says, well I have pain, too, but you don't hear me complaining about it! So now, I can't find support or comfort anywhere. I't been clear I'm on my own. Have been on all sorts of meds, Cymbalta made me literraly insane, Lyrica, a similar situation. Selexa didn't touch the pain. Trazodone made me feel hazy and separate from my body..wierd. I'm challenged by what I can take because most of them don't mix with my epliepsy med. There has been a long time spent staying in bed, just so I could be ready for work. My grown children have no idea. I've been in councelling, which, being a private person, I hated it. My issue, not theirs. Anyway, I just lost my job and at my age and in this state will be a huge hurdle. I want to be that happy lady I once was, but it's so hard! I cry alot and I've isolated myself and am off my fibro meds now because I now have no insurance and had to pick which meds were more necessary. Not trying to be a bummer, just don't have a soul to talk to who understands and found this place after searching. What meds seem to work for you all? I know everyone is different, just want to try something when I talk to my Dr, once I'm on Cobra. I'm definately grieving my old life before Fibro. Best of luck to you all!
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Anon_2912 responded:
For me it only changes what I allow it too change...
 
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fibrofran17 responded:
An356... we could be Twins. No income, no insurance, no support etc etc and older....Been through it all. I decided to just focus on what is absolutely necessary to keep trying to find the right stuff for you. I almost didn't go the my appointment at this clinic this week after feeling ignored for the millionth time. But I went. Took the long sweaty journey. And finally after a long long long time got my diagnosis. It is a liberating thing psychologically for me. I say to myself, OK I have this thing and now I work with that. I tried alot of meds too, bad results. But this one doc had some good ideas, did some blood tests and turned in a new direction to treat me. Even if everybody else let you down, don't let yourself down, keep going and your efforts will pay off. I wish you the best, FibroFran
 
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booch007 responded:
I too can say we could be twins.

9 doctors were seen before I met my champion who understood me, validated me, and helped me! I also changed my job and had to re-invent myself in so many ways.

I was so close to suicide that my husband found a doctor to try to help me, so he wouldn't lose me. I said the "low" is not in my head it is from living in pain.......it sucks the life out of you.

SO, you met the right doc at this point "B I G " this is where it begins, you now have found U S*....B I G . YOU ARE NOT ALONE! Bring all the pain here and share it with us....it is the strangest and hardest situation to be in.

I consider this to be the biggest challenge I have ever faced. We all fight it everyday. You didn't say what you are taking now, I saw you have seizures so I am thinking keppra...but what did the new doc add?

Cymbalta also near did me in too. It is amazing how we are all different. To the right under resources is the toolbox, in there are the stories and fixes of the fmily here for the most part. It was written a long time ago but still so useful to read the path of so many. The drug choices and mixes they use and the NON Medical fixes they do to be better.

I use Soma as my main med. It is a muscle relaxant that is "cheap" a two for one type pill, it becomes a sedative first and then a muscle relaxant....so it is great to get my muscles just right. Used first at night only and then I have needed to progress. I am on Tramadol for the pain, but forever I used Motrin...(just too much of it) and then there is my little blue pill (my bow on the box....) Savella. Also different from the others and would be costly as it is brand new, but it really changed my pain.

I take 250 of magnesium twice a day. Also made a big difference for me, CoQ10 and Vit D was checked and low and I continue on 2000IU of this to today. Calcium every other day.
I only drink water to hydrate the muscles and alot more greens on the plate to antioxidant myself.

This combo of hydration and greens also was a big difference for me. The problem is we all do different things to change the way we are. Someone had folic acid make a difference, I tried it and no change. No one, NO ONE knows the mix. It is trial and error. It takes time. I am on the board now 9 years and that is also how long I am receiveing trigger point injection therapy for this. Aggressive but so valuable to me. So you have to get on your boxing gloves...GET MAD not SAD. And take control here of this. You can do it.

Get a notebook and start writing down what is happeneing with you, find the things that trigger you. I found I needed to first off change my plates. I bought Corelle, they are light and if I drop em' they don't break! Big.... after lifting above my head even a plate to the cabinet..it would bring on pain in the neck and back. My hands are numb in the morning (though this is better now).

Read under Dr. P. his discussions and teaching are priceless..
On Amazon.com put in Fibromyalgia and look at thebooks that are resources for this. I use a book called FM and chronic myofascial pain, a survival munual ; by Dr. Devin Starlanyl.

IT is my bible to look up a symptom and target the therapy I need to use to fix it.....Key in the beginning is to give your body the supplements and hydration it needs. I could never stretch out, the muscles in the morning they had me captive. To walk to the bathroom was torture....I have come a long way, but I started to not give up and give in any more.

I am so glad you found us, stay and post and let us help you through this. tell us what is working and changing you. There is always a trick in the crowd for some of the issues.

Hope this finds you a bit better today. ((((hugs)))) Nancy B
 
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fibrofran17 replied to booch007's response:
Fbrofran here, Booch...ditto on many of your tool box fixes. Savella was great, but no insurance, so couldn't stay on it and that sucks. I think Lyrica might work for me too but $200 a month??? So I just started gabapentin andd it's a miracle after 2 days!!! Feel reborn, my spine has opened up, top to bottom, no pain, hands and feet came alive etc. and it's cheap. I wish a doctor gave me this 10 years ago. Thats the hard part for me. I accept what I have, but not getting treated for so many agonizing days and night of my life have been lost, never to be recovered. Oh well, onwards we go. see ya later, and have a great one. fibro fran
 
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booch007 replied to fibrofran17's response:
Fibrofran:
I tried neurontin the brand name years ago and the fog and tiredness was overwhelming for me, I couldn't even take 100mg. So it was a no for me.

Isn't it amazing how we are all so different. I am glad you found something that helped. Kuddos to the doc for the help....

Have a good day, Nancy B
 
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fibrofran17 replied to booch007's response:
Booch, I think the docs throw us what they have now, in 5 years research will help define the intricacies of the brain and spine and endocrine system better (i hope) so treatment will be more specific to each of us instead of us being guinea pigs which by the way I wonder what damage is done to us experimenting with so many different drugs, just a thought...sorry to be negative about this but to me it just seems commonsence to wonder?
thank you for your answer and have a good day, take care, fibrofran
 
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MartaLee replied to booch007's response:
Thanks Nancy! I'm so very grateful for your advice. I've read through the other replies, as well and thank you all for your comments. I've been so isolated, it's hard to know if others out there are going through the same thing.

I've got my Cobra insurance and went back to the
Doctor to talk about this. I can't take most of these drugs due to the epilepsy conflict in medication and sevella is too pricey. Tried Lyrica with no good result. Am now on an RX of Vitamen D3, as tests showed I was very low. Am taking vitamens and minerals for support, thanks to your advice.

In other good news, my husband has come around and has stopped badgering me, jumping on the bandwagon to help, instead. My daughter has been helping, as well and I finally feel more supported. My hubby has even been researching it online...so Yay!! I also thing losing my job was a blessing in disguise. I used to come home so sore I couldn't function and now I feel better just being able to rest when I need to.

I sincerely thank you for your very good advice. I'm taking it to heart! Lois


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