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Medications
A MyFibroTeam Member asked a question 💭

I was diagnosed with Fibro when I was 11 years old in 1996. At the time there were very few options for me to even try as far as medications. I was on Amitriptyline and a high prescription does of Ibuprofen for about 8 years and then my doctor had me try Cymbalta. It made me very shaky and we discontinued it pretty soon because of that - then I tried Lyrica which did nothing for me other than empty my wallet pretty quick. I am not currently on any medications but have severe pain that keeps me… read more

posted November 25, 2015 (edited)
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A MyFibroTeam Member

Have you heard of low dose naltrexone? It helped me w/ pain when none of the regular fibro drugs did. I recently shared my experience in Fibro Flare magazine. Here's a link: http://fedupwithfatigue.com/traditional-medicin... At the end, there's a link to a resource page w/ more info on LDN.

posted November 25, 2015
A MyFibroTeam Member

Oh and I am looking into getting an elliptical which I have heard is good for low impact cardio. Just 5 minuters a day to start off and then hopefully go up from there. I had tried Yoga but the pain is a bit too strong now for me to really get into it. The yoga meditation is incredibly helpful though. And I will write down a list of these medications you all have mentioned and see what my Doctor will recommend. Luckily I am very near Duke Hospital and they are doing research on Fibro right now.

posted November 26, 2015
A MyFibroTeam Member

Hi, I'm sorry to hear you don't have any meds to help your pain! I couldn't cope. I've had fibro for ten years and seen so many different doctors, many of them unhelpful to downright rude. One told me it was all in my head and he didn't believe in fibromyalgia! And it's so frustrating to get the exercise advice every time...I'm so sick of it. When you're exhausted and in pain, the last thing you want to do is exercise. I usually get a flare up when I try.

I'm very lucky that cymbalta worked really well for me. I've also been taking Tylenol 3, which I tolerate much better than tramadol. It's rough on the kidneys, though, so I only take it when I really need it.

I'm also taking an alternative and controversial medicine, red Kratom leaf, which I think is illegal in some places, although not here in Canada and parts of the USA. It's an addictive drug, which has not been approved by the FDA. So I definitely can't recommend it for everyone. You'd have to do your own research and if you had drug addictions in the past, I would stay away from it. All that said, it completely eliminates my pain for 5-6 hours. I'm very cautious about how often I take it, usually once a week. That way, I won't become addicted and i won't have to up the dosage. There are two other factors keeping me from taking it more often: the high price and the awful taste. It truly is the most disgusting thing I ever tasted, no matter what food you try to hide it in. So I have to be in very, very bad pain to be motivated enough to overcome my disgust.

Anyway, I found that if doctors won't help you, you have to help yourself. And if your doctor is rude, I 'd keep switching until you find someone compassionate and caring. These doctors are rare, but they do exist.

posted November 25, 2015 (edited)
A MyFibroTeam Member

The medications that have helped me most are Tramadol (huge pain relief!!), Pristiq (SNRI), and 1/2 Flexoril every other night (muscle relaxant). I take the low dose of the muscle relaxant and it works almost homeopathically to relax my system. I can't take much more because it causes sleepiness.

The other medication that's helped tremendously is Mucinex 600mg 2x day…but I wouldn't recommend taking it unless you read the book "What Your Doctor May Not Tell You About Fibromyalgia". It explains the protocol in the book…and this has helped me and my son tremendously over the three yrs we started his suggestions in the book.

There are medications that help fibro and I would keep going until you find ones that work. I tried no medication for 15 yrs and wish I could have found my current routine back then because most days I now have very little pain (used to be severe pain every day before).

posted November 25, 2015 (edited)
A MyFibroTeam Member

Are there any educational programs in your area? I am currently attending a five week program through the Arthritis Society called Managing Your Fibromyalgia. It is only two hours once per week. I have been to three classes so far and it has been a Godsend. My Dr. kept telling me that exercise was good for Fibro and to START with 30 min powerwalking per day. I had read that walking, swimming and yoga were good for Fibro but knew that 30 min powerwalking was not going to happen. Especially since I was working full time at the time. When I stopped working in the Spring I bough myself a FitBit to track my steps throughout the day. I found that just with my regular routine I was walking 2-3 miles per day. I told my Dr. and he hasn't mentioned it since. In my course I learned that we are supposed to start with 5 min walking at regular speed (not power walking) and build up 1 min per day from there. When I told the Ocupational Therapist what my Dr. had said about 30 min powerwalking per day as a starting point she was shocked! Another thing I learned was that if your knees and legs are sore when you walk up stairs you are supposed to avoid them as much as possible. When I told my Dr. this, he wanted me to go to Physio to build my thigh muscles up so my knees wouldn't hurt so much. My Dr. has been wonderful to me in many ways. He diagnosed me pretty quickly when I started seeing him. I don't think most of them know much about the illness and how to treat it though. There are also pain management programs at some hospitals that teach you how to pace yourself and work around the pain. Maybe you could check and see what is available in your area? It is very frustrating to be told you have a condition like Fibro but not be told what to do to help yourself. Gentle hugs!

posted November 25, 2015 (edited)

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