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Old 11-30-2012, 08:15 PM   #1
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New Here, Fibro?

Hello,

Recently diagnosed with fibro. Looking for feedback. What has helped people the most? I am mostly sure that I dont want to go on Lyrica, Cymbalta, Sevella or any other antidepressant meds. I have a history of being highly sensitive to most medication.

I may have had what I think could be CFS most of my life. Seems it has turned into more of a chronic pain issue within the last couple of years ago. I recently have pursued issues in my neck and lower back. Have bulging in c5,6,7. Tried 2 CT guided nerve root blocks with what seems to be virtually no success. Neurosurgeon has offed to perform surgery with no guarantee of eliminating pain. Also had MRI of Lumbar and Thoracic. They show some aging issues but nothing that anyone is highly concerned about. Tried 2 lumbar epidural steroid injections with what seems to be virtually no help.

Since treatment i have felt better but think it is attributed to being off of work for 90 days STD. Tried to go back and only made it 2.5 days. Immediately, I was in pain and on the second day my wrist swelled up and became extremely painful. I could not use my hand and had to leave work again. I went to a hand dr and he said it was the gout and shot a steroid in my hand. Can fibro cause this type of swelling, pain? Uric acid levels were 7.2 and in range but on the high end.

I must mentioned that a couple of weeks before work I started to feel like I was coming down with something. I started with an uneasy stomach feeling and some nausea. Thought i was getting a stomach flu because I heard it was going around. Well, it never seemed to come about. Also, around the same time, I had some moments of being bumed-out about going back to work because of the situation there before I left. I know depression, right? Anyway, I didnt dwell on it and thought about enjoying the rest of my leave. Let me add that I have a history of periods of flu-like symptoms.

After the so called gout flare up, I tried colchicine. My thoughts were maybe I have the gout and that is the answer to my chronic pain. The hand healed most likely from the injection and I finished the 9 day trail of colchicine. Never felt great while on it. After this everything started to take on a new level, bad chronic pain. This time, joint, muscle, and nerve issues. Have had pain with all in the past but now more severe and widespread. To describe this, I would say achy joints, muscle spasms and cramping and burning stinging nerves. Around this last month's time frame I can add symptoms of feeling feverish with no actual fever (also a history of this), and mild burning urination and bladder.

Went to rheumatologist and he is requesting tests that may explain this. Never had much luck with anything coming back positive. Went to pain management dr and he right away says fibro and is trying to send me elsewhere. Had some oxycodone left over from the back issues that I use when ibuprophren wasnt helping. Tried to get more and was given tramadol instead which I feel is not safe so probably wont take. Also, have some muscle relaxers left over and had to use a couple of those that seem to help with spasms so i can sleep. Let me add that within the last month or so I now have this vibration in my head that sometimes radiates down into my shoulders into a kind of spasm.

Really tired of getting different diagnosis, meds and referrals thrown at me. I have been reading a lot on line and started some supplements:

5000 mg vit c
fish oil 1000mg/300 omega 3 3x
l-lysine 1500mg
vit b complex subling liq
lipoic acid 200mg
multi vit gummies
evening primrose 1000mg
magnesium 250mg

Would like to add that I have a history of stomach issues and when I dont feel well I now have glands on both sides of jaw that feel achy. Sometimes have other unexplained symptoms, etc,etc. wide history of dr's and testing.

Looking for any/all comments/advice.

Thank You

 
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Old 12-01-2012, 01:52 AM   #2
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Re: New Here, Fibro?

Hello and welcome,
First I want to say that I am sorry that you are feeling so miserable and you are not getting any answers that are helping you. I wanted to know exactly how long this has been going on. Like each symptom? The Dr that diagnosed the Fibro, did he refer you to someone else or are you still seeing them? The Dr never gave you anything for the fibro? Is it that you don't think it's fibro? If you don't, what is the reason why you don't believe it's fibro? I am sorry that you are getting so many different diagnoses. I am more than sure that the reasons you are getting different diagnoses is because you are have so many symptoms. With what you put in your post, I would have said your best bet is to go to a rheumy. If the Rheumy took a lot of different tests and couldn't find anything, then it may be fibro. The lyrica,cymbalta, and savella are the kind of meds that they will prescribe to treat fibro. And I will tell you their the ones that seem to help patients with fibro. You said you are sensitive to those types of meds, so you have taken those actual meds before? I am just shocked because if you take oxycodone and muscle relaxers, their more sensitive to the body than the lyrica, and etc. Maybe you can start at a low dose of the meds and go from there. The stomach problems could be from fibro also. I have fibro, Lupus, RA, osteo, and a tumor in the pituitary gland. I have a lot of stomach issues, but I know mine is due to the lupus. Lupus is an auto-immune disease that fights it's own body's tissues and organs. So my organs are always being attacked by the lupus. Pancreatitis,kidney issues, chemotherapy, high blood pressure, history of strokes, etc. You name it, and most likely I have been through it. The lupus has tried to attack everything. And my white count always stay dangerously low so I end up being hospitalized in isolation. Always having big signs on the door telling who ever come in the room that they had to put on a protector suit and mask. And they would say if you have a fever, cold,flu,sore throat,and kind of infections you should not come in because I will catch it due to the fact I have Leukopenia (dangerously low white blood count). You have lot of symptoms that can be related to a lot of different diseases, including lupus. But, Since you already went to the rheumy and they couldn't find anything then I can rule out lupus and any other auto-immune diseases. The rheumy usually test for a wide range of diseases and if it was an auto-immune disease she would had found in the routine blood work some abnormal results. And then had to take more blood work and more extensive tests. It is a step by step testing for most auto-immune diseases. I would say that if you haven't tried to fibro meds you should at least try. Just explain to the doctor that you are sensitive to those types of meds and try to prescribe the lowest dose possible that will help. I am sorry that you feel like no one is helping but from what I read they are trying to help. They have diagnosed you but you won't take the meds that treats fibro. From the sounds of it I am sure you are stressed and a lot of those symptoms are related to stress. You might want to try the meds for the fibro and see if that helps. Can't hurt to try at this point,right? I know you said the doctor will only give you tramadol and you said you won't take it because you feel it aint safe. Why isn't tramadol safe for you? I hate to tell you but all the meds that you won't take is what the doctors prescribed if you do have fibro. I know you asked the doctor for oxycodone but if you have fibro, most Dr will not prescribe that. Truthfully opiates like that is not treatment for fibro. Now I am a pain management patient. My pain Dr use to prescribe me lyrica, percocet 10/325, fentanyl patch 75mg, and ambien cr for sleep. But my pain meds aren't for my fibro. It's for my Lupus and RA. Also I have severe migraines and after spending weeks in the hospital with the migraines, they found the tumor. I know you are miserable but that is more reason to try the meds that they prescribe to you. Also with my pain Dr we do water therapy. Sometimes that helps certain people with fibro. Sorry for being long winded but I always share my story when I share advice so that you can get a understanding of the person that you are getting advice from. Sometimes it's hard to listen to people when you feel like they don't have a clue what you are going through. So I wanted you to know I do understand being in pain all day everyday. I was diagnosed with Lupus almost 15 years ago. The fibro came just a few years ago.Then a year after I found out about the fibro they told me about the tumor. The RA and Osteo are problems that the lupus created. Now if you don't think you have fibro then there is nothing wrong getting a second opinion. With so many symptoms it is normal that it takes a awhile to diagnose. I really hope you get some relief and fast. Good luck to you! Keep me posted and let me know what happens.
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Old 12-01-2012, 07:49 AM   #3
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Re: New Here, Fibro?

hi newbie,
welcome. ask your doc to do a blood test for sjogrens. it can affect organs too. have you seen a urologist? depending on your age it could be prostate related. as for the increase in pain, depends on where you live. winter is hardest on most of us with fibro.
peace,
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Old 12-04-2012, 08:18 AM   #4
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Re: New Here, Fibro?

Just got back from rheumy. Looking like gout and fibro. gonna start allopurinol 100mg then after a month gabapentin 300mg. The reason for the delay is because of my sensitivity to meds. Wish me luck.

 
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Old 12-04-2012, 08:43 AM   #5
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Re: New Here, Fibro?

Gouts not fun, my husband gets periodic bouts with gout. He doesn't even go to the doc for it, their cure is as bad as the gout itself. We have learned to treat it with vitamins and other supplements. Big thing to keep it at bay is to watch your diet of rich fatty foods , high carbs and alcohol.

During a flair 3 tbsps of tart cherry concentrate daily. After as a maintenance.1 tbsp daily
as much vit c as you can tolerate, lowers the body of high uric acid
fishoil or flaxseed (omega 3) 3x a day
bromelain for inflamation

There are other supplement you could use, google natural gout treatments and you can find all kinds of good info.

 
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Old 12-04-2012, 10:04 AM   #6
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Re: New Here, Fibro?

Which meds did your husband try?

 
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Old 12-04-2012, 07:21 PM   #7
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Re: New Here, Fibro?

Why not trying Lyrica? ----- I think it is more potent than gabapentin and also allows sleep so you can get rid of your muscle relaxants.

Gabapentin is a mild pain killer. It does helps sleep and stomach pain but the sleep is not so good as with Lyrica.

 
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Old 12-04-2012, 08:16 PM   #8
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Re: New Here, Fibro?

hi I have fibro. Stay on the magnesium its good for the muscles. Water therapy is good exercise for us if you can find a pool warm enough. Mine needs to be at least 84 or so or I hurt the next day. I tried the lyrica but couldn't take enough of it to do any good. I take topomax and it does me good. Started off on a low dose of 25 mg at night for a month then worked my way up to 100 but still only take it at night so it doesn't make me tired during the day have enough of that.

I also have chronic fatigue and addison's. So just take it easy, one day at a time. You have to find the med that works for you, trial and error, don't be so quick to give up on a med. give it time. Watch for swelling with the neurontin and lyrica. if you get up to a dosage and start having bad side effects back down for a bit til they go away and then try going back up.

also, lidoderm patch (lidocaine in them) are great for cutting in half and putting on trapezoid muscles (mine kill me) to ease the knots. you can also take a tube sock and fill it with long cooking rice (uncooked) tie a knot in the end and heat it up in the microwave and wrap that sucker around your neck, its wonderful.

just some tricks I've learned. sometimes you have to use ice for pain, sounds weird I know.

good luck and let us know how you do. Cathy

 
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Old 12-04-2012, 08:43 PM   #9
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Re: New Here, Fibro?

Doesn't Topamax cause you stomach pain?------- -------------

But the deal is with Lyrica is that it allows you to sleep. (it has the gaba effects). I did a mistake couple of years ago. I used to take it and decided to stop. Now I would like to go back to it cause it allows you to sleep and I fed up taking sleeping pills.

I am not sure it will help my pain but I would like to try again. I only tried it for 3 weeks and I guess that wasn't enough.

I have pain in the neck from a whiplash So doctor said back then lyrica will help.
So we will see.

Magnesium???-----does nothing for me.

Why couldn't you up your dose of lyrica?
p.s your trapezoid(spelling...)muscles hurts, tell me about that....
Did you have a whiplash?

Last edited by nochange; 12-04-2012 at 09:08 PM.

 
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Old 12-04-2012, 10:48 PM   #10
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Re: New Here, Fibro?

No topomax doesnt bother my tummy. Lots of folks w/ fm have trap. Pain. No whiplash here. Trazadone is another good one for sleeping btw.

Cathy

 
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Old 12-05-2012, 06:59 AM   #11
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Re: New Here, Fibro?

Quote:
Originally Posted by fleckbass View Post
Which meds did your husband try?
It's been so long (at least 10 years) I can't really recall, but they had him on 3 different meds and it really messed with his stomach. But we do remember the natural cure works faster.
If it becomes chronic you learn to recognize the early signs and jump right on it before it goes full blown

 
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Old 12-05-2012, 11:06 PM   #12
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Re: New Here, Fibro?

Nochange-Very leery to take medication that works on brain chemistry. Sounds like most that have used Lyrica have had terrible side effects. I'm not sure I want to start Gabapentin. My history of side effects with much simpler drugs is endless. I have only taken an occasional muscle relaxer when needed.

Last edited by fleckbass; 12-05-2012 at 11:08 PM.

 
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Old 12-06-2012, 05:22 AM   #13
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Re: New Here, Fibro?

If you're leery of taking any of the prescribed meds keep reading this board. There are lots of alternative treatment suggestions hiding in the archives. Regardless of which way you go it can only make things more bearable. I look at it as I'll never be totally pain free for the rest of my life, so I make the best of it that I can and keep on keepin' on the best i can without over thinking the pain. That just makes it worse..

I take cymbalta, it was a tough decision to even start it. Lyrica and I did not get along at all. There are times I wonder how much the cymbalta helps and think about going off it and other time I think it does help, I think back to when I first started it and how much better I felt then and can only assume how I'd be without it...yes that is major confusion spewing out of my brain LOL

 
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Old 12-06-2012, 07:34 AM   #14
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Re: New Here, Fibro?

hi,
i was on gaba for 10 years. i started having tiny strokes. 8 of them over 3 years. turned out to be the gaba so i quit. never had another one and am left with some permenant damage. every drug is a crapshoot so you just have to choose and see what happens. i was on the drug 7 years with no problems.
i choose to take a walk before bedtime and that helps with leg pain, body discomforts and deeper sleep. i also found meats and wine increase my symptoms so i quit that too. just a veggie girl now. what a difference~
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Old 12-06-2012, 07:34 AM   #15
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Re: New Here, Fibro?

hi,
i was on gaba for 10 years. i started having tiny strokes. 8 of them over 3 years. turned out to be the gaba so i quit. never had another one and am left with some permenant damage. every drug is a crapshoot so you just have to choose and see what happens. i was on the drug 7 years with no problems.
i choose to take a walk before bedtime and that helps with leg pain, body discomforts and deeper sleep. i also found meats and wine increase my symptoms so i quit that too. just a veggie girl now. what a difference~
peace,
blue
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