Fibromyalgia

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6 years 4 months ago #20632 by grappers
Replied by grappers on topic Fibromyalgia
Hi MichelleO,
As Mary pointed out there are pain clinics and pain clinics, we have had a few people on our forum, because of not so reputable clinics been put off seeing any others, so research is important before out laying heaps of money, believe it or not public hospital do have very good multidisciplinary pain clinics, and free to the general public, the downside is some have long waiting lists and a referral is needed.
Do they benefit chronic pain sufferers, most definitely, these specialist within these pain clinics only deal with chronic pain, the psychologists and psychiatrists deal with all aspects that affect chronic pain, something that is lacking in seeing others not associated, everyone within the clinic will be on the same book in relation to pain management, and anything related to ongoing care is relayed to your GP, so scripts for medication can be supplied by them.
If they offer a pain management course, do yourself a favour take it up, these courses are invaluable for us, they teach you tools to cope with living with CP, you will also learn life does continue and you can still make the best with what you have been dealt, acceptance is the key to moving forward.

Lets us know how you get on,

Don

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6 years 4 months ago #20633 by jrp
Replied by jrp on topic Fibromyalgia
Hi MichelleO. Can I suggest you get your GP to put in a referral for you to your nearest public multidisciplinary pain clinic now. You can still see the private one while you wait to get in too the public service. In the long term it will cut your costs markedly.

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6 years 4 months ago #20643 by Natasha
Replied by Natasha on topic Fibromyalgia
Hi Jo, I was diagnosed with Fibromyalgia in 2004. I am a Chronic Pain Sufferer (Neuropathic and Musculoskeletal). Have tried various drugs, including Neurontin. But it is Lyrica that has helped. I have read, only a small percentage are affected by side-effect and I was one of them. Side effects such as weight gain, wheezing etc. When I started gaining weight and wheezing etc, wondered why. Learned from a web link, by chance that Lyrica was the cause. I shared my fears with my GP. She advised I stop taking it completely and see if the symptom goes away. Symptoms cleared but the Nerve Pain returned with a vengeance, even though I was continuing with Oxycontin. I called my GP, who then advised I start again on half the dosage of 300mg. Could not cope with the pain level. Ended up spending more time in bed as all chores became painful and had to stop going for walks. I had to return to the full dosage of 600mg. I now know, should the side effect return, I can repeat the same process. We are all different. I reckon we need to try out and see what best works for us. I hope this helps.

Lyrica and Oxycontin became very helpful where pain resulting from Sciatic. For years, I was not able to lie on my right side or on my back. Oxycontin and Lyrica has helped. If it were'n't for these medications, every movement would be a pain. When I stopped Lyrica, the Sciatica pain returned as well. I feel very blessed being cared for and having a chance at life to this level.

I suffered Brain Fog and severe memory lost when I was suffering Chronic Fatigue Syndrome. It was so very bad, that my train of thoughts would be lost. I use not to take part in conversations, after many embarrassing moments that I had. Most hours of the day was spend in bed. I was successfully treated for it and have not suffer brain fog since then. Age is not helping where memory is concerned. But I consider it normal for my age. I am still in pain 24/7. But take great comfort in the thought, that I have come a long way.

Jo, I started trying to share some of my experience with Lyrica but seems like ended-up sharing more. May the information you gather on this great website help you make informed decision.

All the best
Nat

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6 years 4 months ago #20644 by Mary
Replied by Mary on topic Fibromyalgia
Hi Natasha. Welcome to the forum and thank you for sharing your story.

I also take Lyrica for neuropathic pain and I wasn't aware that it could cause wheezing. I had a mild wheeze, but my main problem was that I was clearing my throat all day. I was put through lung function tests which came up with basically nothing. My general physician decided to try a Symbicort inhaler and it was like a miracle. He just puts Asthma?? on any documentation or prescriptions now because I have never been diagnosed with Asthma. Maybe it's the Lyrica!

I am glad that you have been able to find some relief with Lyrica and Oxycontin. They are starting to say now that Lyrica does not work for Fibromyalgia and you are living proof that it does for some people. I feel for the people who will never get a chance to find out.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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6 years 4 months ago #20645 by Natasha
Replied by Natasha on topic Fibromyalgia
Hi Mary :) , Thanks for your email. After reading your email about the wheezing bit, I remembered, before I had read on the internet about the side-effects of Lyrica, my doctor too tested me for Asthma and I came clear with it like you. I had forgotten to mention raised Blood Pressure was one of the side-effects I experienced. My doctor had advised, if the BP continued to remain high, she would consider increasing the dosage of my BP medication. It was by my next visit, by which time I had already discovered the cause for the side effects and thus my GP was able to truly guide me to deal with the negative side-effect. If I had not by chance discovered the cause for the side-effect (there was no Information Sheet in the Lyrica Boxes), I would have had no chance of knowing the cause for the bad medical symptoms and doctors easily can make the mistake of making unnecessary increase in medication, that could have been cause for serious consequences. I am sure doctors know better.
Not everyone who is on Lyrica have access to Internet Use. It is a good thing, only a small percentage of patients on Lyrica suffer side-effect.

I strongly would urge, if there was some way I could do that, the Pharmacy Companies enclose Information Sheet, in the Lyrica Packaging. Just a thought.

Natasha
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6 years 3 months ago #20805 by Carpediem
Replied by Carpediem on topic Fibromyalgia
Hi everyone,

I just wanted to update you all and get the word out there. 2 days ago i got the call from my functional medicine doctor i don't have Fibromyalgia I have Lyme diseaseeeeeeeeeeee. This is hugeeeeeeeeeeeeeeeeeee

There are a lot of peopel who are being misdiagnosed with fibromyalgia when they really actually have lyme disease its a chronic infection that is pretty much teh same symptoms as fibro and CFS. If you want to know more info please message me. The sad thing is if u have been diagnosed with fibromyalgia but actually have lyme then you won't receive the treatment you need to get better. The key is to find the root cause of the issue i always believe there is a reason why the body is unbalanced it's just finding it thats the hard part

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