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lisabeans
@lisabeans

Posts: 85
Joined: Feb 13, 2017

Fibro diagnosis, lots of pain, scared I may have an ai issue too

Posted by @lisabeans, Aug 21, 2017

Brief history: suffering from joint and muscle pain, swelling, hair loss, tingling sensation is hands and feet, horrible pain in knees, ankles and elbows, burning pain in shoulders and legs. Been to a local rheumatologist after having a low positive ana. Started me on predisnone and I felt great. He ruled it as inflamatory. Almost 3 years later, still no real diagnosis. Went to Penn Presbyterian University Hospital for a second opinion. The pa said I have fibro and not enough evidence to prove inflammatory. She made me stop the arava I was on and take amitriptlyne. The arava must have been helping more than I realized. Coming off it, I am in horrible pain. Went back to the second rheumotologist and she said give it more time and increased the amitriptlyne. 2 weeks later I am still in extreme pain, exhausted and confused. I did start aqua therapy which helps me feel good in the pool. I don’t know if I should get a third opinion. The second rheumy said I could have ulcerative colitis induced inflammatory pain but my uc is in remission since 2012. I have had a low grade fever off and on for the past month. She said I could have had the flu. I feel like a hamster running around the wheel and getting no where. Sorry for the long post, I am just scared, confused and tired of not feeling good.

Liked by nacc

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That sounds so difficult for you ,having pain all over.Surely they will let you back on that Med that helped your pain.Pain is so very difficult.

Since my second rheumatologist believes it is nust fibro, she won’t prescribe the arava. I may go back to my first doctor. I really don’t know what the right answer is.

Hello @lisabeans, I would like to invite @blindeyepug, @nancirae, @clownscrytoo, @sandytoes14, @robbinr, @irene5, @chari978, and @persist to your new discussion about your recent fibromyalgia diagnosis. Each of these members has discussed treatments and coping mechanisms for fibromyalgia in the fibromyalgia pain, https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/, discussion and may be able to understand your symptoms and concerns.

@lisabeans, how long did your new rheumatologist say that it would take for your new medication to start working?

(If you are replying be email, I suggest clicking on VIEW & REPLY to go to the website so you can see this new discussion on fibromyalgia)

Liked by nacc

Thanks. She didn’t say how long. She said by next appointment (9/9), she will switch my medicine to gabapientin. By my next appointment it will be 2 full months off the arava ( so far no relief).

@lisabeans I was prescribed Gabapentin for back pain. I had a laminectomy (outpatient back surgery) in December 2016. However, after several months on it I realized that I was having trouble remembering things and I felt foggy and not able to concentrate on anything. I was taking 300 mg 2 times a day. The doctor wanted me to take the pill 3 times a day, but when I tried to add the 3rd pill I was so “drugged ” I couldn’t function. After reading on Connect that many others were having problems with taking Gabapentin, I decided to stop it, withdrawing slowly. I successfully stopped the drug. What I found was that I had less pain without the medication. That surprised me. I don’t like Gabapentin and I have read a lot about it since stopping it. Be cautious and research this med before you agree to use it. I know you want pain relief, but I hesitate to think Gabapentin is the right drug for relief. Good luck, Gail B Ledesma

@gailb

@lisabeans I was prescribed Gabapentin for back pain. I had a laminectomy (outpatient back surgery) in December 2016. However, after several months on it I realized that I was having trouble remembering things and I felt foggy and not able to concentrate on anything. I was taking 300 mg 2 times a day. The doctor wanted me to take the pill 3 times a day, but when I tried to add the 3rd pill I was so “drugged ” I couldn’t function. After reading on Connect that many others were having problems with taking Gabapentin, I decided to stop it, withdrawing slowly. I successfully stopped the drug. What I found was that I had less pain without the medication. That surprised me. I don’t like Gabapentin and I have read a lot about it since stopping it. Be cautious and research this med before you agree to use it. I know you want pain relief, but I hesitate to think Gabapentin is the right drug for relief. Good luck, Gail B Ledesma

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Thank you for your input on gabapentin @gailb. We certainly have had a lot of members discuss this drug, https://connect.mayoclinic.org/discussion/gabapenten/. From my own learning reading everyone’s posts on gabapentin, it seems to vary greatly from member to member and is really based on the individual. While Gail is not alone with her experience, there are quite a few members on Connect who did receive relief using gabapentin. I think taking caution from Gail’s post in to consideration while giving this drug a try is wise.

@lisabeans, it is wise to research what you are taking and take any concerns to your medical provider. Ultimately, it is best to follow your providers direction, but being aware of possible side effects is certainly OK.

@gailb

@lisabeans I was prescribed Gabapentin for back pain. I had a laminectomy (outpatient back surgery) in December 2016. However, after several months on it I realized that I was having trouble remembering things and I felt foggy and not able to concentrate on anything. I was taking 300 mg 2 times a day. The doctor wanted me to take the pill 3 times a day, but when I tried to add the 3rd pill I was so “drugged ” I couldn’t function. After reading on Connect that many others were having problems with taking Gabapentin, I decided to stop it, withdrawing slowly. I successfully stopped the drug. What I found was that I had less pain without the medication. That surprised me. I don’t like Gabapentin and I have read a lot about it since stopping it. Be cautious and research this med before you agree to use it. I know you want pain relief, but I hesitate to think Gabapentin is the right drug for relief. Good luck, Gail B Ledesma

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Hello. I have spinal stenosis. Have been using gabapentin w/o much results. Doctor just switched me to lyrica. Any thoughts? Thank you.

Hi Ayan….I have spinal stenosis and herniated degenerated disc’s in my neck with other things going on too. They tried me on gabapentin and did nothing, I also have tried Lyrica. Although the Lyrica did help relieve the pain, I had side effects with my lower legs. I made them ache and hurt to walk but I don’t think everybody has that side effect. I found it was much more effective and gabapentin. I know people that take it and have no side effects. Hope you’re one of those people. Jennifer

My first diagnosis was 20 years ago for fibro. Since then I have been diagnosed many times. 20 years ago they didn’t have a clue on what to give you to help. Pain meds certainly don’t work with fibro.Then went to a rheumatologist who said that a low dose of flexeril would help at bedtime. Also to exercise in the pool. I have to say I am not pain free , but it has helped greatly. As much as you want to not move because it is painful,you must move your body or it gets worse. Sometimes I am in pain when I go to the pool, but I come out feeling so much better.

Liked by virtuous69

Thanks. I am nervous about the gabapientin. My husband was on it and had all the complaints mentioned above. I have been doing some online reading. I read some ra patients have bunions. I had a bunion removed about 8 years ago since it was extremely painful. My toes have never been straight but when I had the bunion removed, he had to break my toe to straighten it out. My grandmother had bunions too. She never went to doctors much so I don’t know her whole history.

@gailb

@lisabeans I was prescribed Gabapentin for back pain. I had a laminectomy (outpatient back surgery) in December 2016. However, after several months on it I realized that I was having trouble remembering things and I felt foggy and not able to concentrate on anything. I was taking 300 mg 2 times a day. The doctor wanted me to take the pill 3 times a day, but when I tried to add the 3rd pill I was so “drugged ” I couldn’t function. After reading on Connect that many others were having problems with taking Gabapentin, I decided to stop it, withdrawing slowly. I successfully stopped the drug. What I found was that I had less pain without the medication. That surprised me. I don’t like Gabapentin and I have read a lot about it since stopping it. Be cautious and research this med before you agree to use it. I know you want pain relief, but I hesitate to think Gabapentin is the right drug for relief. Good luck, Gail B Ledesma

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@jJustinmMcClanahan, having leg and tingling electrical pains in my lower legs again and considering going back on gabapentin. But I can’t remember why I hated that drug and was so glad when leg pains stopped for a year or so. Will look at your link again. Virtuous 69

@gailb

@lisabeans I was prescribed Gabapentin for back pain. I had a laminectomy (outpatient back surgery) in December 2016. However, after several months on it I realized that I was having trouble remembering things and I felt foggy and not able to concentrate on anything. I was taking 300 mg 2 times a day. The doctor wanted me to take the pill 3 times a day, but when I tried to add the 3rd pill I was so “drugged ” I couldn’t function. After reading on Connect that many others were having problems with taking Gabapentin, I decided to stop it, withdrawing slowly. I successfully stopped the drug. What I found was that I had less pain without the medication. That surprised me. I don’t like Gabapentin and I have read a lot about it since stopping it. Be cautious and research this med before you agree to use it. I know you want pain relief, but I hesitate to think Gabapentin is the right drug for relief. Good luck, Gail B Ledesma

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I have suffered from chronic pain for 35+ years and have been on both gabapentin & lyrica. I also had no relief on the gabapentin & others at my pain clinic often reported the same thing. I was also on the maximum amount of lyrica and started falling quite often. My family doc had just been at a seminar the night before and had learned that it was a side effect of the drug so he reduced my dosage while I waited to see the pain doc. I found that my pain level never changed so over time I stopped taking it completely. The end result was that it was costing me $10,000 a year and there was no difference in my pain level so it was useless all of that time. It is often described as the best drug available but it didn’t help me at all. I certainly hope that your experience is far better than mine. I know of a second person who found the same thing but we all process meds differently so you may have better success than I did. Since that time I have learned to be very aware of my pain level at all times. I am also on medical marijuana & I just found that the that was recommended for my pain & inflammation does not cover either of those issues so I am waiting for a new type to be available next week. The oil that. I use for night works far better but it makes me too sleepy to use in the day. This may be another choice for you depending on where you live.

I understand. How are you now?

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