Fibromyalgia - does anyone know of any good doctors from MN?

Posted:: 18 Jun 2012 by joeiy02
Topics:: headache, pain, fibromyalgia, doctor, chronic, medication

Details:

... I live in a very small town with small minded doctors, who don't believe in fibro. My records for the last year all say the same thing, I want help with headaches, my current medication quit working, I have severe back pain upper and lower. He continues to do nothing about it. He had the nerve to tell me once he didn't want me to end up like my mother. She also suffers from this disease, and takes medication. What a thing to say. Oh he also says I needs to lose weight. Which OK maybe I do, but I wasn't heavy until I was put on Lyrica. Now I am about 30-40lbs overweight I guess. I have been requesting a MRI, and NO, he won't give me one. I am concerned because I am shrinking. I used to be 5'7 almost 5'8 now I am barely 5'5. and that's over just 5 years. Any help would be greatly appreciated. I don't want to just start going from doctor to doctor and seem like I am doctor shopping.

Respond to this Question

Report Mark as Favorite

Responses (7)

nledesma1...

18 Jun 2012

Hello I also suffer from Fibromyalgia and currently taking Lyrica 150mg twice daily. I've also gained 30 pounds asp far. Do you have any ruptured disc in your neck or back that you might know of. The only way to tell is a MRI which I believe you need. I have 6 ruptured disc myself and if I were you I would go to another dr even if it means driving a hour to get there. You definitely need answers!

Votes: +1

Comment Vote up Report

pledge

18 Jun 2012

Hello joeiy02. You might access the American Medical Association. I believe that thier members are listed as to thier specialtity as well as thier place of business(s). Regards pledge

Votes: +0

Comment Vote up Report

Anonymous

18 Jun 2012

If you are losing height, it could be that you have osteoporosis. It is very common to lose height as you back will get compriesion fractures & believe me they make you less tall. As far as the Lyrica, I also gained about 25 pounds on it, but founad out is was al water weight attributed to high blood pressure from taking Lrica. The day my doctor made me stop the lyrica, & pur t me on Furosemide I lost 6 ponds in 2 days of nothing but water weight, & within a month the entire 25 pounds was gone without dieting at all. Lyrica is known for this problem. It sounds like you need to see a rheumatolgist not a GP for your fibromyalgia & possible osteoporosis. Even if you ad to drive or have someone drive you to a city, it would be worth your while.. A DEXA scan can & would tell you the density of your bones, & if your doctor can't do one, most hospitals have the equipment to do one. It is very important if you have this disease of the bones, that it start being treated as soon as possible because it only gets worse... Mary

Votes: +0

Comment Vote up Report

Anonymous

18 Jun 2012

Hi joeiy & welcome to the site. Being on Lyrica they must believe you have fibromyalgia otherwise they would not have prescribed it as it is a seizure med that is used off label for firbomyalgia pain. too used to take it & gained 25 lbs from it. I also got a bad case of high blood pressure from it, & found that the weight gain was from water retention & not actually fat in the tissues. Others have complained about this drug too causing weight gain. It does help some with the pain of fibro, but others don't like it at all. If you have lost that much in height, it almost sounds like you could have pretty severe osteoporosis. The only way to tell this is to have a DEXA scan of you hip & ankle bone area. It's just an xray type of test that measures your bone density in those area. Almost any hospital has the correct Scan to do this My doctor has one in his office. Compression fractures of the spine can cause the loss of height.

Expand this post...

Votes: +1

Comment Vote up Report

Anonymous 18 Jun 2012

Sorry about the double post. I saw the typos in the first & tried to edit it, but apparently was too late & it posted too! Sorry again... Mary

Anonymous 18 Jun 2012

Is the Mayo Clinic in MN? I would go there if I were you, if your insurance will cover it and you can convince your current doctor to send you there.
That sounds doubtful though. Your current doc sounds like a bit of a dinosaur. He's living in pre-historic times, no such thing as fibro?
Good luck to you,
Ondi
P.S. Fibromyalgia sucks!

View all 5 comments Add your Comment

oxypana

19 Jun 2012

Hey Joey, I can't help you with the Dr thing I'm in another state. But lyrics does make you gain weight. I was on it for a very short period of time & I gained it quick. It is ad others say water weight. Get off it and took loss it pretty quick. As for your Dr not believeing in fibro neither did mine. I go to a othro Dr every 3 month's. I do have sever. Arthritis but he never says fibromyalgia either I was diagnosed by. Another Dr in 09 with it. I have neuropathy so to me that's the worst pain any other to me is secondary. I have back pain, bulging discs in my neck, its always something. I myself didn't believe in fibro either but it is a fast growing illness. It is painful. I found exercise, minimal for me helps, walking, elliptical. Don't get me wrong, I'm on pain meds for my Nero. I couldn't function without them . I have tried.but your shrinking, that happened to my mother, it was her arthritis, ostioperosis.

Expand this post...

Votes: +1

Comment Vote up Report

Anonymous 19 Jun 2012

Hi oxypana, I hate to interupt this thread, but is there anything besides exercise that helps your neuropathy? I have fibro and neuropathy as well, and the neuropathy is far and away the worse pain.
Is there any position, lying down, or sitting in a certain manner that helps you? I also have a few discs in my neck that are degenerating, and lying down somehow makes the pain better for me, I believe it takes stress off of the pinched nerves, or so says my doc.
I've had coritzone shots in my neck, but to no avail, they caused minimal pain relief for only for a few days. And any steroid stays in ones body for a longggggggggggg time, and can cause problems, made me a crabby female dog!!
If you have any suggestions re neuopathy, I'm all ears!
Thank you,
Ondi

Anonymous 19 Jun 2012

Hi Joey, I apologize for hijacking your question!!
I can't believe you were NOT given an MRI, that is irresponsible at best, and negligent on the doctor's part. Those doc's should be held accountable for that omission. Mary is right too, you need to get an MRI and fast.
If things are bulging out of your spine, get to a good hospital, a University hospital. University hospitals can be expensive, but you are worth it, AND, if you hire an attorney, maybe you won't be responsible to pay for it, perhaps the doc's that didn't do the proper tests at the beginning can help pay for the whole schmegeggie!!
If I were in your shoes I would contact an attorney over this. And I'm not a litigious sort of person. A lawyer may help you get on SSI disability, if you cannot work, and that doc needs to be dragged into court, to explain WHY he/she didn't do an MRI. Bloody idiot doctor!!

Expand this post...

oxypana 19 Jun 2012

Hi Ondine, god you sound just like me. Literally. We have the same exact health problems. The shots unfortunately for me did not help, they made me worse. I couldn't use my left side for almost 3 months. Idk if they put the meddle in wrong, I felt it moving in my neck. Ugh..but I was also allergic. Had. Fever, throwing up for a week. At least it helps you. As for the pain in my neck the only thing that works is lying down. I use a pillow that conforms to ur neck or wherever you put it. I get migraines constantly. Finally the Dr gave me topiramate 50 mg, I was dupose to take 2X a day I can only take once. I don't no if you get the headaches but this medicine seems to alleviate the neck pain as well and its not a pain med, except for migraines. Upside you lose weight on it not gain. Try yoga. Nothing hard I got a Wii Nd use the exercise on that. On thing my Neuro Dr told me to do buy the Wii & board. It totally helps with the balance issues.

Expand this post...

At 1st I was horrible, falling constantly, very unsteady had to hold on. After a couple weeks I was shocked at the improvement on my balance. Besides the Wii exercise, walking, elliptical, which is harder. I thought I would die after 5 mins my 1 st time on there. But you go up. And foods. Have you looked into what foods mae you worse? Yes their are foods their Neuro worse. I eat healthy. Apple's are good for us. Helps your energy level too. Also baths with sea salt. The salt is amazing. Not the kind you buy in your everyday store. It's pink rocks add it to a HOT bath. Lay in it you can literally feel it pulling something from the spits that hurt the worst. My legs are the worst for me. I'm not 100% sure the name of the site my brother bought me the salts I got. 50 lb bag. It last very long. I gave some to a friend with back injuries she was amazed. She said when she got out she felt so much better and for days after she even gave her mother some for her leg pain. It works. I Lao take sea aloe, its a liquid vitamin. You take a capful a day. Our b12 is very important to keep up, my des say my levels in Ll vitamins are great. She knew immediately I took some kind if supplement she couldn't figure out what with all my levels being great til I told her( my Neuro Dr) she said keep on it. And I don't no if they have this where you live drink vitamin water. I drink the vitamin zero. It's better for you. This will help those nasty nerve cramps we get. Also learned from my Dr. It's been 5 yrs I drink nothing but. Of course I switched brands until I they came out with the vitamin zero but I found it helps the best. Also I add in there G2 low calorie. When ur exercising we sweat more then normal ppl from pain. You loss a lot if vitamins. They are a key factor to our nerves regenerating so its upto you but you can try this stuff. It helps. The liquid vitamin you can get only online unless you live in ca I believe. It's www.naturesliquids.com. $40 a bottle. Last me about 2 months cause depending on your size you don't need a whole cap. I take half now. I used to take a while cap. It detoxes your body if nasty raducles and everything else so if ou decide to try that I'm warning you the 1 st maybe 3 days you will think you have a slight flu. You will be in the pot, so to speak constantly and you will smell toxins coming out of your skin. It won't make you sick that you can't fuction tho. It's worth it. And you will loss weight on it. I lost 20 lbs when I 1 st started it and my energy level went up so much I felt wonderful. All these things combined help. I have studied everything and anything I can find Nd have tried it all Ty hear are the thingI found that help me. I'll pass them on gladly too you if they help you wonderful. The pain is horrible. ,But I sleep now. I didn't sleep for. A Yr with pain just off and on. Anyone with this disese, I wonder what we did to deserve it. It's like cancer no cure, no known med to help us, trial & error. Just pain management for me. So I do what I need to do so I don't end up in a wheelchair. I get burst of energy for days then I crash hard. Yesterday I slept for 13hrs. But for 4 days I was non stop going doing thing. Sure I had pain and I had my I have to stop and rest times but not I can't do anything. Before all the exercise, vitamins baths etc..I was on the couch not able to move at all.
I hope this helps.
You ever have any questions feel free to message me. I am always getting new suggestions from my drs or coming across things during research I will try and pass in only if it works for me. A lot of it is nonsense. I hope they at least keep you comfortable with meds. Not lyrica, cymbalta. That's nonsense to me, phyc meds don't work. They didn't for me just made sick and crazy. The pain makes me a bitch as you said.
Sorry this is so long but to tell you it all it had to be. I should've messaged you alone instead of invading this post. Well Odine let me no. nd don't over do exercise you'll cause yourself more pain then its worth. 5, 10 mins to start even after you think I can do more I feel good. I did that... big mistake!!
Keep me posted Im always interested in fellow Neuro buddies plus I'd like to keep in touch see if it helps at all. I'll send you any new methods that come my way that work too.
Have a great day.
Lori

View all 8 comments Add your Comment

Anonymous

20 Jun 2012

Hey Joeiy, and welcome. I see that you were given some excellent ideas about the fibro, and what to do, but I do disagree with a few comments,and wanted to add my experiences. Everyone has said not to worry about the weight gain from Lyrica, it's just water weight, and you will lose it. True, that it is water weight. BUT, that doesn't necessarily mean that your body will drop the water weight as soon as you stop the meds. I was on Gabapentin (a very close relative of Lyrica) for almost a year, and gained 80 pounds!! All my doctors kept telling me to stop eating so much, and I believed them that I must have been eating to much. Not true. My doctor sent me to FIVE nutritionists, and each one of them said that I didn't eat ENOUGH!! I thought that was the truth, but the weight just kept coming on.

Expand this post...

Votes: +2

Comment Vote up Report

joeiy02 20 Jun 2012

I agree with you about the weight gain with lyrica. I was taking a nutrition class for my college and I had to do a daily food log for three days, I can in at like 800 calories a day. I am supposed to be eating 1500-2000 a day to maintain my weight. something is obviously wrong. I gained alot of weight and can't lose it either. I just stopped my celebrex, hoping it will help with the weight. I don't know what else to do. I have been off the lyrica for about 1.5 years now. I am just maintaining my weight. My doctor says I am overweight, and if I lose weight my back will be fine. Well I was down to 110 pounds, and up to 200lbs my back never changed. Weight can be an issue I am sure, but for it didn't matter. Thank you for the comments. I am trying to get a hold of my insurance company and see if they will let me go to a clinic I found. Thanks for the support everyone! :)

Add your Comment

Lydette

20 Jun 2012

Hi Joeiy and everyone I know and love from the Opana blog.

Joiey, I was also put on Lyrica for stenosis and neuropathy. And like all the Ladies who are responding, I started to gain a lot of weight. Because I am overweight already (not by a lot) and all the spinal, cervical and lumbar conditions I have to deal with I needed a way to address the situation. Again, like others, I was prescribed alternatives to Lyrica and they simply do not work. As Opana is for real pain suffering, so is Lyrica to those who have nerve damage. I tried going off of it and my nights turned in Dante's inferno... as the hours passed, the burning increased until by the end of a sleepless night I was in tears. Lyrica helped that.

Expand this post...

Votes: +1

Comment Vote up Report

Add your Response

Find similar questions