Fibromyalgia..what's worked for you? - Fibromyalgia Acti...

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Fibromyalgia..what's worked for you?

Desirose81 profile image
7 Replies

Lyrica had me super sad....just started amitriptyline last night..25mg. Lights out!

Feel bad pain today.,but can't take it in the

Day cause I'd pass out on my 4yr old. I've tried tizanidine, Trazodone, Lyrica and now amitriptyline. I don't know what else there is out there so if anyone could let me know what they have tried and what's worked that would be great. I am extremely full of gas and very bloated in my upper stomach and I'm wondering if I I'm also lactose sensitive in my older age. And never really drink or eat anything with much lactose to I know that and the tribulation has lactose in it though not much I have not felt this bloated and all this pain from gas plus I've had surgery where they've actually put gas in my body. Is there anyone that can help me out? I have chronic pain and extreme back and neck issues that require surgery. My doctor is looking to take me off of the Oxycontin I've been on for 4 years that is 80 milligrams. She's trying to find a substitute but is still looking. She said something about a time release hydrocodone instead and I guess I don't know anything other than what I've been on which would be the fentanyl patch that actually worked well once I found the right dose and manufacture, I know that there are other patches that are like percocet or something else but the fat not actually works very well for me except my doctor is very leery of Fentanyl all around. She's my new doctor and I told her I've been on it before and it worked quite well and I was also scared of it in the beginning but as long as you take it as you're supposed to you are fine. I am new to having fibromyalgia flares bad as they are. I've always just been told I have nerve issues and was never really diagnosed but I have been on medication for fibromyalgia for a long time and was just told that it was for muscle spasms because I felt like at the time my doctor didn't want to diagnose me with anything she just wanted to treat me for my symptoms and didn't want to give the label to any of my crippling pain or find out what the cause was. But now I have a new doctor that is trying to actually do something and the first thing she wants to do is take me off of the Oxycontin that I have been on for so long and I'm very worried to have a seizure of which I have had before from withdrawal. She assured me that she would not put me in that position so I am hoping she is legit. I asked her why everyone's being pushed away from the sort of drugs and she said that the government only wants to give them to people who are literally dying. So I guess I will do some research on medication that will B similar to Oxycontin and see what I find. She is also researching as well. But she wants me off in 2 months and I don't know how I feel about this amitriptyline but what about booze bar I know that's not how it's spelled but I'm using my voice to text. Any info would be great sorry for such a long post but I really do need help trying to get on the right path for my chronic pain, anxiety attacks, ptsd, depression and fibro flares without having to worry so much about withdrawal and side effects of gas pain or weight gain, thanks in advance.

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Desirose81
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7 Replies
BlueMermaid3 profile image
BlueMermaid3

Hi there

I am sorry that I can't recommend any meds to you as I'm not a medical professional.

What time did you take the Amitryptyline?

You need to take it around 6pm to avoid the horrible groggy feeling the next day.

I am on a cocktail of different meds but still live in pain 24/7.

Hopefully your GP can come up with something for you.

As long as you wean off the Oxycontin very very slowly with your GP's help hopefully you will be ok.

I hope you are able to find something that helps you.

Unfortunately it is very much a matter of trial and error. What works for one person potentially will make someone else very ill.

At least your GP is dedicated to helping you.

Wishing you much peace

Lu xx

TheAuthor profile image
TheAuthor

Hi Desirose81

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I am so genuinely sorry to read of your suffering and struggling and as BlueMermaid3 says, what works for one may not work for another? I use a TENS Machine which I really do find useful in helping with pain. I also have a different pain killer called Nefopam which is a centrally-acting non-opioid analgesic drug. Therefore I can take it with other pain killers such a Codeine.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

Best medication is ever found was sleep&resting totally natural in a comfy bed but with all natural real cotton sheets and listen to my body as some days i'd spend most of day in bed nodding off sometimes short napps other times id drop off then others i'd not need much sleep at all and others just couldn't get to sleep you just have to learn/work with it.

But keep away from meds as much as possible as most don't really work just cause more issues then need something else>>>> till your rattling like a bag of nails.

I drink plenty of fluid& be mindful of what im eating i also don't have salt or sugar on anything apart from what comes in/with it.

Nita7 profile image
Nita7

Hi Desirose

I understand your frustrations, at least you now have a doctor that is trying to help. I was told I am theatrical. Eventually I saw a pain consultant 17 years ago and to this day is still using his prescription. The dosages were reached by trial and error. I take 150mg slow release tramadol twice a day and 25 mg amitriptilyne at night. Apart from that I take citalopram 40mg at night as it makes me drowsy during the day and help at night with my sleep pattern. The citalopram was prescribed because I get anxiety from the extreme pain. The consultant told me to take paracetamol as extra help when the pain gets too much. I have been doing gentle stretches (pilates prescribed by Physio) for the past 17 years (every 2nd day because I get too tired to do it every day). This has helped tremendously to keep my joints supple. Sometimes it aggravates the pain, but I push through and am proud of myself when I reach this goal.

About the lactose, I do not know if my intolerance to lactose and all kind of sugars, is due to fibromyalgia, but I know it makes the pain unbearable when I have these in my diet.

I have been attending toyohari acupuncture twice a month for the past 10 years, which gives me the energy to do the stretches. I would rather go without a new pair of shoes, than skimp on my health. You can google toyohari to see what it is about.

There are several issues to every kind of medication we use, I am just not that willing to try and bear the pain without it. I prefer to see the glass half-full and just appreciate some of the days that life is almost normal (for me).

I wish you all of the best, just push through and get help.

in reply toNita7

but did you know a real decent fitting&comfortable pair of shoes make a massive difference! as your posture is so improved because if your feet are not well supported neither is the rest of you as always trying to compromise your balance!

Nita7 profile image
Nita7

Thank you for your reply. I would invest in a good pair of shoes.

Tuscany profile image
Tuscany

I agree about the footwear. I have plantar fasciitis too so comfy footwear is essential. I have tried a few different meds over the years. I use Amitryptiline - 50mg. It sends me straight off to sleep at night. I use dihydrocodeine and naproxen, and i'm on Fluoxetine. I tried morphine but it didn't agree with me. It's all trial and error x

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