Treatment : HiI have just finally been... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Treatment

Gowest123 profile image
9 Replies

HiI have just finally been given a diagnosis of fibromyalgia by a rheumatologist after 3 years of pain and fatigue.

I just wanted to know what treatment people are being given and if you see anyone about it. The rheumatologist has just told me to go back to my GP and to be referred to pain management.

I was hoping there would be more information or a specialist to talk to about it all.

Thanks

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Gowest123 profile image
Gowest123
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9 Replies
Gowest123 profile image
Gowest123

Thank you for your reply, unfortunately my GP is very old school.and doesn't like referring I had to push for the test I have had. May be time to see a different GP. I just wish there was a specialist I could see for fibro

Purplelife123 profile image
Purplelife123

unfortunately I don’t think there are any specialists ( maybe I’m wrong) you would think there would be with amount of people who suffer from fybro. Most people get referred to rheumatologist and a lot of them are not really interested in fybro and send people back to gp for pain management.

1whitestar profile image
1whitestar

My first appointment with rumerthogly was very good a leaflet and offered 2 types of medcation that can help. I was offered duloxtine or antripline. I decided to go with duloxtine. And that has took the pin pricking out and it has helped a great deal.

Loobielu profile image
Loobielu

I had the same experience as sweatyarse123. Rhyumatologist diagnosed and then discharged me back to GP. She did however prescribe 10mg amitriptyline but I couldn't tolerate the side affects and it wasn't helping enough. When I spoke to GP about coming off Amitriptyline she eagerly agreed but had no interest in helping me further 🤷🤦. I hope you get a better experience than me 🙏. Best of luck x

Pdady profile image
Pdady

I'm sorry to say this but in my experience after being given this label your on your own . Pain clinic is a joke having someone explain pain when you're living with it day in day out and not been told why you're getting this pain or what is actually causing the pain doesn't really help. The best advice I could give is self management depending on how your fibro affects you. There is a lot of good advice on this site if you look for post that you can relate to and find something that works for you. I have got to the point where I have given up with doctors altogether changing docs doesn't help. Good luck finding something that works for you

Yassytina profile image
YassytinaFMA UK Volunteer

Hello , you will proberly get various answers on members experiences , me personally after diagnosis it was trying too get the right meds too ease any aches@pains , a lot of us go with the pacing method through out the day , harder when people are working too pace but trying too rest at different times of the day or weekend is my biggest form of help , the forum I find is very helpful with help and advice, members experiences along the way. You have joined a very big club ☹️take it day to day as each day can vary for sure. A good forum .

KimiJay profile image
KimiJay

So sorry to hear about this. At least it seems like a proper diagnosis which I also got from my pretty decent, clued in doctor via a rheumatology appointment when long standing migraines and aches and pains and fatigue really began to kick in after our move here twenty three years ago. I gave amitryptaline a good try but became a zombie.

Fortunately I have a supportive hubs who has shelled out for regular traditional acupuncture treatment and chiropractic treatment over many years. Had been near to retirement anyway, (though not from the responsibilities of housework, decorating and gardening) so still ran the gauntlet of pain and exhaustion and stopped being outgoing and sociable. That is one of the costs of fibro.

On the plus side, it's the physical interventions that have helped me most. My doctor also advised then that I should take a regular dose of St, John's Wort as I had been very depressed at the time. (Extreme care must be taken with what things you mix with this substance but it's good to keep for really bad flares and depression and not take continually.) Rhodiola is a good alternative. There are other herbs and I sometimes use voltarol to good effect. Trawl the net for nutrients including studies on NMN but don't believe all you read as some sites are paid to throw doubt on old remedies and studies on them.

Many on this site use the term fibro warrior. You may realise you have been one of these for a long time already and have been finding ways to deal with it for ages too. Best of luck with the challenge ahead.

selltile profile image
selltile

i'M IN cANADA AND THE SAME SCENARIO. ABOUT 4 YEARS OF IT'DD RHUMETOID and them boom--we're adding fibro to the diagnosis--Have a good life-see you in 9 months grrrrrrrrrrr

gemimafibro profile image
gemimafibro

Hello and Welcome. I have also recently been diagnosed with Fibro after seven years of experiencing unexplainable pain. It began when I was 23. I had been tried on many medications by my GP before I was even diagnosed but each one made me a complete zombie of a human, these included Gabapentin and Pregabalin. I already take Amitriptyline for my mental health and I have found this to be the best for myself personally. At my diagnosis appointment, I was given a leaflet that I can summarise for you here - "get on with it" 🙄.

At said appointment I was told to begin Duloxetine 60mg to help manage my pain and that I was now discharged. I did so for a month. This medication sent my heart rate to 140 at rest. I was told to immediately stop Duloxetine and that they would eventually be removing the Amitriptyline too. He didn't offer any alternatives, or any other treatment options. I nearly broke down at this comment. Being told I would be taken off the one medication that had helped me manage a modicum of my pain and my mental health in tandem was too much. My GP said "well you don't want to have a heart attack at 30 and die", to which I countered "I would rather take the risk of having a heart attack than "live" my life confined to my bed due to agonising pain because that is no life at all". He could not understand me in the slightest.

Living with Fibromyalgia pain is an incredibly frustrating existence. You have to aggressively advocate for yourself at every turn and fight just to be treated like a human being. It's very easy to want to give up, lie down and just take it. I really hope you can find a treatment option that works for you and that your GP is respectful of your pain. There are many many lovely people on this forum willing to share their stories and they have already helped me immensely with information and their experiences. I'm sorry you have to be welcomed to this club, but I welcome you none the less and hope we as a collective can help you, even if it's just a little.

Gemima ❤️

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