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Pros and Cons of Lyrica. Newly dx w/ fibro. Please Help!

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Posted 11/19/2014 3:25 AM (GMT 0)
Hi Everyone.

I have samples of Lyrica from the rheumatologist. I know that people have said that like many meds, it helps some and not others, just have to try it. A few things I have read also indicate that Lyrica has a reputation for lots of side effects. Just wondering if anyone out there has been on or is currently on Lyrica, and what kinds of side effects, etc, have you experienced with it. I know every body is different, so whatever you tell me may or may not happen with me, but I'd really like to hear about your experiences.



In case you are interested, here's some background info on me and my story:

My name is Sunny, I am 36, female, just dx about 2 weeks ago. Began having pretty bad pain in my hands/wrists/fingers as well as other joints/parts of the body, only since June 2014. Saw a rheumatologist twice now, he ran lots of blood tests, did x-rays, and lots of poking and prodding and stuff. He decided it was fibromyalgia based on all the test results.

I have a long list of medical problems including: chronic migraines, TMJ problems, bulging discs & stenosis & degeneration in my neck, pinched nerve in neck (causing symptoms down left arm and thumb), chronic low back pain (following spinal cord surgeries 16 years ago), significant dental issues (looking at replacing all teeth with implant system), Spina Bifida, neurogenic bladder, IBS-C (chronic constipation, complete bowel incontinence), prolapsed uterus & rectum & bladder (early 2015 will have colostomy surgery, along with hysterectomy and bladder sling), history of gastritis and problems with acid reflux and that sort of thing, lots of nerve damage to bowel and bladder, decreased sensation due to S.B., and mental illness (bipolar type II, anxiety disorders, borderline personality disorder, severe sleep problems).

So, along with all those come a long list of medications. Won't get into those now. But feel free to ask if you have any questions.

My understanding of fibro is that it's not so much that there's actually anything wrong with the joint or whatever, but that it's more a problem of the signals the brain is sending and receiving related to pain. Like it's kind of over-reacting to any pain signals out there. Is that correct or am I way off??

If I'm understanding it correctly, then I'm confused about some of the things I do to deal w/ the pain. I often wear "arthritis gloves" (provide support and compression to the hands), they seem to help. Not sure I understand why they would work if the pain isn't really caused by any sort of "defect" in the joints. I don't even know if I'm making sense anymore. Lots to learn I guess (at a time when I am not super tired).

Anyway, any helpful hints about Lyrica (or anything doing with fibro treatment or understanding it better) are very welcome and would be greatly appreciated!!

I do also spend time on the ostomy forum, as well as the chronic pain forum and a few others on occasion. Have found lots of great support on healing well.

Sorry this got so long but thanks for listening, and I would really appreciate any feedback you have for me!

Thanks a lot.

Sunny.
Posted 11/19/2014 4:10 AM (GMT 0)
Fibro is a bad case of overactive nerves in the body (atleast that's the theory now).
I don't take lyrica, but do take it's cousin gabapentin. It does fine for me.

One thing to remember is you will never be fully pain free. The pain waxes and wanes to it's own whim. We have found that stress, illness, and not pacing ourselves can cause flares of increased pain.
Posted 11/19/2014 5:41 AM (GMT 0)
The only significant side effect from Lyrica - and I've been on it since about 2007 - is that it puts on a little weight around the middle, but then again so does Prozac or Zoloft that one is often prescribed with fibromyalgia. Initially my general practitioner and I tried Cymbalta, but my body rejected that one something fierce - I ended up in emergency - they thought I had a stroke.

For years my doctor gave me samples of Lyrica before it was put onto the public health benefits scheme in this country - otherwise it would have cost around AU$70 per month - then someone on this site recommended I write to Pfizer (? - the drug company) and ask to be put onto their "compassion supply". Well I did, and that worked for years so much so that I even came off it for a while. Then I got our member of parliament to ask parliament to get it put on the "free list". Now, ironically, it costs me $6.80 per month, instead of being free - but I figure at least I've helped other sufferers.

Good luck with Lyrica - I don't know what I would do without it! Be still hobbling around on a walking stick I suppose.

By the Way - I have been given the "all clear" with breast cancer - so technically I now only suffer from hypothyroidism and fibromyalgia - plus a couple of other minor chronic ailments. And for all those of yo9u with fibro - the worst thing about cancer (now that I am meant to be "over" it) was fibro - most people don't understand how bad it is. Cancer to me, was a walk in the park after fibro. I was ready and armed for cancer because fibro taught me how to fight and re-adjust my life. Message is - doctors tell me that the reason I am a survivor is because of my attitude - well let me tell you - my strength for handling cancer after fibro is because fibro taught me - plus a belief in a higher being.
Posted 11/19/2014 6:42 AM (GMT 0)
Welcome to the fibro forum! You might be surprised how much of your medical history could fall under fibro symptoms. As I read your list I could see many that do fall under fibro. As I learned in depth about fibro I had a huge list myself. It actually made me feel better that I wasn't going to die or fall apart anytime soon. I was taught how to managed many of these symptoms that fibro caused. I learned so many tools here from others. Since your on the other forums, you probably know how healing well works. Your doing the right thing about asking questions.

It has been years since I took lyrica. I didn't like it becaused I felt foggy in the brain plus weight gain. I didn't really give it a chance to see the difference for pain control. I am so senstive to most meds that I kind of shy away early trying new meds. Hopefully it will work for you.

I have had fibro for many years. I have taken boat loads of meds for it only to find out the natural remedies seem to do well for fibro. Things such as heat, limit stress, good sleep habits, exercise, eat healthy and vitamins. I do take a few meds to help with pain and depression.

It sounds like you have a huge surgery ahead of you. I just had an hysterectomy. It was the best thing I had done. I feel so much better in the back. That uterus can really cause lots of back pain. I hope things go well for you at surgery time.

Please feel free to ask questions. I hope we see you around the fibro forum more. You will learn so much here. It's a very active forum. It really has turned my life back into joy.
Posted 11/19/2014 11:12 AM (GMT 0)
I couldn't take Lyrica because it gave me stomach issues. I now take Neurontin (gabapentin) and Flexeril and have done pretty well on them.

I like using heated bed buddies or a heating pad. Topical muscle rubs are helpful, too.

Trying to stay somewhat active is important, too. I used to sit or lie down too often. Now I try to get more steps in my day, if my feet are cooperating!

Wish you the best! :)
Posted 11/19/2014 6:43 PM (GMT 0)
I was on Lyrica for a couple years. I was a new patient with my Headache and Pain Relief Doctor. I gave him many notes to read about my conditions. He recognized that I had nerve damage. I was first seen by a Neurologist at a Pain Centre. He told me I would hear Fibromyalgia mentioned. He thought that most of my problems were due to Arthritis. Fact is, he could have helped also.

I came off Nortriptyline and was put on Lyrica. Baclofen (muscle relaxer) was also added to my meds. I truly had no really terrible side effects from Lyrica. I was taken off mostly due to weight gain. I did read one suggestion that it could cause nerve damage when used long term. I asked my Doctor about the suggestion and he did not think it would. I now know that my nerve damage might be from medication to rid of a bad stomach infection.

The one thing that happened after coming off Lyrica was that I began to get horrible nerve spasms in my back and behind when I was trying to sleep at night. Lyrica might have been masking the spasms as I would get weak twinges while trying to fall asleep. I was told to increase Baclofen for the nerve spasms. I tried, but it didn't stop. Once off Lyrica, I now realize that it did provide some help. I also would take one 8 hour Arthritis Tylenol a day. I have now stopped the Tylenol due to rebound headaches. Meds can cause rebound headaches also. I went back to see a Dentist at a Hospital who originally prescribed Nortriptyline. I have jaw pain. She really didn't do much inspection of my teeth. My regular Dentist, too, can't see anything visually wrong. I was again prescribed Nortriptyline and I was told the jaw pain is from Neuralgia. The Nortriptyline has stopped my nerve spasms. It is not doing much for pain though.

I am impacted terribly on windy days. On Lyrica I would feel my nerves. Not sure if I was feeling the meds going through the nerves but I felt my nerves were buzzing.

I have read good and bad about Lyrica. Meds are so individual. The medication is used to take pain out of the nerves.

I have many of the same health challenges as you. I have chronic daily headaches that I was told when first diagnosed, by Neurologists, that they might be caused by the Osteoarthritis in my neck. The headaches are the worst part of the many things I cope with. They are not like the two migraines I had years before while using birth control. I don't have aura, I don't have a problem with light or noise. I do at the moment know that my sinuses are contributing to the problems. They have been thoroughly checked a couple years ago and nothing major was found. I know a virus I just rid of impacted my sinuses. I will talk to my Headache Doctor this week.

Hope Lyrica will be helpful for you.

Loring

Osteoarthrtis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...
Posted 11/20/2014 12:52 AM (GMT 0)
Hi, Sunny,
We are glad to have you on the forum. My heart goes out to you; you are dealing with quite a load of cares. I have never been on Lyrica, so I can't help you there. There is a search feature up at the top, near the blue tabs. Try searching Lyrica within the forum; I bet you will find many answers by scrolling through all who have posted about it in the past.
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