... 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.
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.
It ended up that a very rare side effect of gaba IS water retention, and when they took me off of it, guess what?? No more weight gain, BUT I have not been able to lose the extra water weight since, and this has been over FIVE YEARS. I recently found out from a doctor when I was hospitalized again with cellulitis in my leg that with that much water weight, your lymph system can't possibly drain that much fluid. Apparently your drainage system in your body is the size of a hair follicle, and when you hold that much fluid, you can imagine how all that is going to drain. SO, if the Lyrica doesn't help you, which it sounds as if it doesn't, GET OFF OF THE MED!! I now have to wear compression hose daily, which are the biggest pain, and by the end of the day my ankles are "cankles" as my son calls them!! I can't stand this!!! I have to take a water pill now everyday, and of course the side effects from a diuretic means that I have to take potassium daily, and the side effects from that means that I have to take extra magnesium daily, and I STILL am carrying all that fluid on me which is NOT healthy for my heart. BTW, I have recently lost 40 pounds, and I STILL am carrying around a TON of fluid. In fact, I just had to buy new compression hose, and they measured my ankles, and they are four cm wider than two years ago! That's how quickly the water weight drops on some people.
One more thing, if your height is going down, Mary is right, and you need to get a DEXA scan and ASAP!! That is not caused by DDD, but osteoporosis and compression fractures which could also be the reason you have so many back problems. I would certainly listen to what everyone said here to follow through with all suggestions!
Best of luck to you!! I really hope that you find a doctor and soon!!
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.
My answer was simple but of course it's held other ramifications of having to take more meds. Topamax. My cp doc prescribed one Topamax (there are generics now so the cost is not a real problem) 100 mg along with my evening Lyricas (2 1oo mg in the evening) and the weight came off and stayed off plus it seemed to add to my general pain management.
Everyone is so different I do not know if this would be a solution for you and others, but I know it has worked really well for me. You can look into this site for info on Topamax of course. I have not done that yet for myself.
Good luck. To you and everyone else chatting about this. I have found that the nerve damage I have in my spine has created the most horrific pain out of all my issues. It's one of those things that takes ones' breath away and the only times where I have felt true hopelessness. And it persists. Even with the Lyrica when my nerve pain kicks in, life becomes a living hell. But I respect every cp doc for trying to address it, even if it might be considered unorthodox (though not illegal !) :-)
Love to all,
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!
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. Have you ever been checked for that? It is very painful. I would have a bone density test done and go to a specialist not your Pcp. I no my specialist takes care if me I don't even have to go in I can just call now. I'd also been goin for yrs. I am in therapy now just for motion because I'm having knee and elbow pain. He gave me valuim to loosen up my body. It seems to help. Plus as I said you might want to the try exercise. No one said run a mile tomorrow, I'm allowed 10 mins a day. You'd be surprised what that can do for you. Sometimes I feel like I can't but wheni get started I feel better. Just some advise that might or might not be worth trying.
And I would drive as far as needed to get to the Dr that would help me. Just do it. And who cares what ppl think if your going from one Dr to the next. Until you find one that helps go. As long as you aren't accepting meds from them all go. And don't stay with one if the other helps. II just think you need a specialist. But I'm not a Dr.
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
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.
It sounds to me like maybe you & your doctor are not communicating to well. I would suggrest you see a rheumatologist who are doctors who specialize in treating fibromyalgia patients. Even if you have to drive or be driven a bit to a larger city, this sounds like your best bet to get properly diagnosed & treated. I might also mention that teaching hospitls are great place to go usually found at Universities. I wish you the best, & please let us know how you are getting on... Mary
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