Help!!!

[fibrofran]

Hi everyone. I have just signed up to this support group (should of done it years ago) anyway, I'm looking for some advice, help, anything about fibromyalgia! I'm 25 and I was diagnosed with fibromyalgia and ME (CFS) 3 years ago after "I should of died" type of event. Over the last three years I remained in work as a mental health bank nurse in so ure wards and in the community. Not really knowing anything about fibromyalgia and the flare ups I juggled work a 2 year old moving house the lot. I have spoken To a lot of DR'S and a rheumatologist who first prescribed me 75mg pregablin and duloxotine. The duloxotine made me sick and the pregablin wasn't enough. So over the years I have tried everything, different meds different doses and nothing. I. Been having severe flare ups the last 10 months when I'm in to much pain to move or bed bound from exhaustion. I felt that all the DR'S iv seen don't really get it or even care until recently. My DR now genuinely wants to help and after weeks of titrating meds I am now on MST. The MST worked fab but doesn't touch the sides when I'm having a flare up,so we were Considering oramorph as PRN (when needed) as fibromyalgia pain is bad enough andto top it off i have sciatica. He is now on long term leave and the DR i have now is refusing to let me try because she goes by trials tests and sadistics, she doesn't look at me as 1 patient. My point is what doesn't work for you may work for me. Is any one benefiting from pain relief from morphine, codeine. I just don't want to be in pain anymore.

[fibromite35]

I'm so sorry to hear that. Finding a Dr. that really understands is hard. I don't know anything about actually taking morphine and I'm allergic to codeine. But I always prided myself on not taking narcotics and have been on Ultram for years. But now it doesn't work anymore and the dr. is changing up all my meds. I'm scared! I wish you luck with your dr. Wish me luck with mine!

[fibrofran in reply to fibromite35]

I envy that. I wish i didn't have to take meds. I only took painkillers when i suffer with migrane's. I was in the army at 16 all ways fit and healthy now I am on 8 cocodomols, 2-4 amitriptylines, 600mg pregablin, naproxyn, morphine, sertraline, mirtazapine, I have a tens machine pain relief gels, I mean it's ridiculous. I hate taking medication, but the pain is just to much. Taking new meds or changing the doses is scary, I won't lie but if it's going to benefit you then it is worth it. I always google medication and check for any interactions before I take them just to put my mind at ease. But I will wish you all the luck I could because what we have, sucks xx

[VonnyM]

No pain med works for me. Opioids make me itch, gabapentin and pregabalin makes my face swell, nsaids give me bellyache. I have tried noradrenalin, norapinepharin Which just made me want to sleep And they made me stupid. I hope you find something that helps you

[caroline47]

Have u try gabapentine

[fibrofran in reply to caroline47]

No not gabapentin. My rheumatologist wanted me to start on pregablin. Not sure why they are both quite similar but pregablin is the stronger out of the two. It could be due to the fact that i was only 21 at the time. All meds work "ish" on a normal day I just want something when I have a flare up.

[Chad_R]

Hi fibrofran,

I feel your pain.

I'd write more if this were a locked post/thread.

I wish you well.

Chad

[fibrofran in reply to Chad_R]

I'm not tech friendly so i would not know how to make it private haha.

[Chad_R in reply to fibrofran]

Hi fibrofran If you'd like your post to be locked, you may check "community" after you write your post. There is also an explanation in the upper right hand area of the forum page. I had sent you my response via PM. Nice to have you on the forum.

[TheAuthor]

Hi fibrofran

Welcome to the forum and I genuinely hope that you find it useful, informative and loads of fun! I have pasted you a link below to our mother site, FibroAction, which hosts loads of useful Fibro information:

fibroaction.org

I am so very sorry to read of your suffering and I sincerely hope that you can find the answers that you so desperately desire and deserve. I must admit that I have never used morphine but I do have codeine tablets from my GP. I was told however, not to over use them as they are addictive. So I try to keep them to a minimum. I have found, personally speaking, that a combination of medications works best for me. I have Nortriptyline, Pregabalin, Sumatriptan and Metacloperamide (I also have other drugs for other illnesses).

I also do 20 minutes a day of very slow, gentle physiotherapy, and this really helps me a great deal.

All my hopes and dreams for you

Ken

[Hidden]

Hi fibrofran

I took codeine and paracetamol mix for years and it didn't really help me at all but you're talking back in the days when my many GPs didn't take me seriously and I was obviously imagining my pain. You are so right to point out that what works for you may not work for others because we are all very different with a wide variety of other symptoms and illnesses to manage alongside the Fibro.

My fellow admin Ken has given you the link to our Mothersite and I'd like to direct you to one of our FAQ's which discusses what to do if you think your meds aren't working for you, it is full of useful links to useful fact sheets

FAQ - My current medication doesn't seem to be working, what treatments are recommended for Fibro?

healthunlocked.com/fibroact...

I am sorry that your GP has been not so understanding, yet, it does sound as if there is an opportunity of progress for you on that front and wish it goes well for you.

I hope the info is helpful for you and if there is anything else please ask away.

Soft fluffie hugs for you

xxx sian

[Mrsfibro2015]

Hi Fran, I take Tramadol everyday for pain, Citalapram for anxiety and to put back some serotonin (because this is used up combating frequent pain). Also omeprazole to protect my stomach. no other pain killer I have found works better than Tramadol. Go back to your doctor next week and demand it! Good luck x

[fibrofran in reply to Mrsfibro2015]

I was given tramadol for a use when need basis by my Gp that is trying to help, and I was taken off them by the Gp who I have whilst my Gp is on leave. She took them off me and put me on an extra 200 cocodomols a month instead.. I can't even say the cocodomols help me ad much anymore as the tramadol didn't make much of a difference, it's down to the placebo effect. The Dr I am seeing atm whilst mine is away is a drug and Alcohol Dr Who claims to be a fibromyalgia "expert". So she does not like opioid based medication in fact she loaths them and will avoid them at all costs, but for her piece of mind due to all the death and abuse surrounding them, it's nearly as if she pre judges people on other people's addiction.

[fibrofran in reply to Mrsfibro2015]

My "good DR" gave me tramadol a while ago as a PRN (only take when needed) I didn't see the difference. I took it more for the placebo effect. The Dr Who I have whilst my "good dr" is on leave took me off them ages ago and gave me an extra 100 cocodomols to take a month. She is a drug and alcohol abuse GP and she loaths all opioid pain killers, due to the addiction and abuse stigma that surrounds them I feel that she pre judges people on other people's miss use so she will avoid prescribing them like the plague. She is very textbook driven and seems to be effected by past experiences. She has changed my cousins long term repeat because she was on tramadol. She had been on it years, and 100 tramadol would last her months as she never took them every day. She has crumbling discs in her back and with two kids she can't just rest. So this Dr told her to take amitriptylines and paracetamol. So she tried it and couldn't get along with the amitriptylines. So she went back and seen my "good dr" and he gave her tramadol again with gabapentin as her discs are now touching her nerves. So she suffered because this Dr has a gripe with opioid pain killers.

[fibrofran]

Thank you all for your advice, talking and researching In to it all I feel like the baby being iv only had it three years. I am fortunate enough to be in the era when fibromyalgia and CFS is proven to be real, but that's not to say that some GP's believe that this is the case. I'm sure we have all been told that antidepressants are proven to help (that's all well and good if they don't make you vomit!) So far sertraline is the only one that agrees with my body. I was only given mirtazapine yesterday and amitriptylines are no lo her used as a antidepressants dose. Iv learned to deal with the normal day to day pain and fatigue lucky for me I have a very high pain threshold, but it's the flare ups I find disabling. I'm not sure about others but I have two different types. One of them being exhaustion and needing more meds to control the symptoms of exhaustion and the second being the pain. Iv never had a problem with addiction and iv been on some of the most addictive legal drugs one being 3 different types of benzodaiazapeines (they did not touch me either). I do empathise with GP'S as it can't be easy trying to titrate meds for us but me being in the health profession you can't always go by the book. As their are always people that find themselves in that "it did not work for me" percentage of trials. And it does not matter if you are a rheumatologist or one of the scientists doing the trials, it will not work for everyone. Again. Though thank you so much for your help and I will go ahead and look through the mother website and see if I can find something their.

[annacruachan]

Hi fibrofran,

I have been on buprenorphine 10 microgram patches which last 7 days (haha) for 11 years and have had considerable pain relief from them. However, nothing touches the brutality of a flare up - a good reason for pacing properly! That's something your job doesn't allow you to do. Any chance of changing to something less stressful?

I tried cocodamol for about a year; it was effective but also addictive. I can promise you that you really don't want withdrawal symptoms!

I hope your regular GP comes back soon and that you find all the help you need.

Gentle hugs.

Anna.