My partner has been diagnosed with fibromyalgia and has had several appointments with the rheumatology department at the local hospital. After today's appointment they have just increased her amitriptyline to 20mg and then said go to your GP if anything changes.
Surely this is not right. Surely there must be some sort of treatment plan offered rather than simply giving her some drugs (which don't really help) and sending her away? Can't believe how we are being treated. Just because there is no cure surely the NHS should be helping treat it. Is this normal and what should our next steps be?
Thank you for any replies.
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TractorDog
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I was diagnosed with Fibro 5 years ago and I am now 24.
I'm afraid that the NHS is my experience no so little about this condition and in the 10 minute slots receive so little information that they can't treat you properly.
I was taking 30 tablets a day last year due to my doctors 'treatment' just being increasing tablets and adding other tablets. I have been to multiple specialists, tried all of the alternative suggestions with no luck as of yet. The best advice I can give is her for her to talk about it with someone she trusts as the adjustment is hard and huge.
To get straight to your question it is perfectly normal and usual for a Rheumatologist to only see someone with Fibromyalgia once and then discharge them back to their GP.
I was diagnosed in 1980 and have lived with Fibro and ME for 36 years.
I was 20 when I was diagnosed.
Unfortunately there just is not much that can be done about Fibromyalgia other than medication, gentle exercise and rest.
Fibromyalgia affects each and every person very differently. Some are able to manage their Fibro and live a fairly normal life whilst people at the far end of the scale are house/bed bound.
In my own opinion the best thing your partner can do is for her to learn as much as she can about how her Fibro affects her and try to manage it as best as she can.
Learning as much as you both can about Fibromyalgia is a good idea too.
If you have a look at our mother site you will find a wealth of information about Fibromyalgia fmauk.org
There are various things that her GP can refer her for. Some of these are CBT (Cognitive Behavioural Therapy) which is a talking therapy, Physio and a referral to a Pain Clinic.
Do be prepared for a long wait for referrals. I waited nearly a year to see the Pain Clinic.
agree with your reply i was told it may start from long term stress, but there so many answers i think self help and groups like this.is the only answer.
Hello and welcome TractorDog sorry your partner has been diagnosed with Fibro it is a very frustrating illness for everyone concerned. You asked why the NHS is not treating it just because there's no cure. I think you may have answered your own question. They can't treat what they don't understand. There is no specific pill for fibro. And the ones they have on offer either have no effect or very limited effect on the illness.
The one thing to remember Fibro is not life threatening. It may feel so at times but no one to my knowledge as ever died of fibromyalgia. Many people can still hold down a full time job have a family run a home and other's can't do as much. There is a life after fibro maybe not the same one but it could open doors to learning new things and leaving the things that are difficult behind them.
I do believe a positive mind set is one of the best tools you can have in the bag when dealing with fibro what ever age you are. I have had it for 30+ years and I raised two kids worked part time and looked after my home. Pacing is another good tool to use. Finding out all you can about fibro is another. Not so good tool is anger it will only frustrate your partner more and make her feel worse. Take one day at a time and deal with the symptoms as they raise their ugly head. And most importantly she must listen to her body it will tell her when she needs to slow up.
I appreciate it is hard to do anything with such little understanding but I had hoped there would be a way to at least try to ease some of the pain.
We have read about trigger point injections and are considering going down that route. Do you, or anyone else for that matter, have any knowledge or insight of them?
Hi I have never had the injections myself but i have read many who say that they actually felt worse after having them. I think the reason maybe because they are what they say trigger point injections and The knotted up pieces of muscle fiber called trigger points are found in myofascial pain syndrome not fibromyalgia. The two are distinctively different conditions with very different diagnoses . But if you have both FM and myofascial pain which people can have together I think the person would feel some benefit from the injections.
But I wouldn't put you off trying anything. The sad thing to many of us who have had this for many years we have been where you and your partner are right now and spent a LOT of time,money and precious energy looking for that miracle cure.
But again I would say don't be put off trying anything that you think may help just try not to be too over whelmed or disappointed if it don't work.
Have another word with the GP and ask what medication he/she as to offer your partner to try because there is some out there. They may just be the right ones to take the edge of your partners pain. But please talk with your GP.
I was diagnosed 5 years ago by my gp who refuses to treat my fibro with any drugs. I have asked on a number of occasions for a referral to the rheumatologist.......and I've got a big fat NO from my gp, despite being off work for 9 months with the pain. They told me they manage cases of fibro at the gp surgery.....eventually my gp caved in and now gives me regular paracetamol... my gp and her colleagues really don't care....perhaps it's because my pain is not so bad I hear you cry........I can assure you that it is not the case, as my fibro symptoms are pretty florid. Doing fibro with virtually no painkillers is a nightmare!
So my heart goes out to your daughter......she's only 22. You'd think they'd be working towards helping her regain some quality of life......they're implementing cuts in all the wrong places!
Your welcome my dear and i wish you both the best of luck and try and stay positive there will be plenty of good days ahead i'm sure because your partner sounds like she as a keeper in you.
I sincerely hope that you and your partner are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. Sadly, there is also a core element of the medical profession that still do not recognise Fibro as real! They have the notion that it is all in the mind, to go alongside those that do not understand its complexities.
I want to sincerely wish you and your partner all the best of luck and please take care of yourself my friend.
Sorry but having had fybro for many years you are fortunate to get to the hospital. This condition is ignored for years and not well understood by GPs . I have been to the top guy in London and even then only a few drugs were offered to try. These were not offered to me by GP? The good news is that there has recently been a newspaper report that is going to instruct GPs to take this condition seriously and offer more support. the only way I deal with this is to try and reduce any stress ; reduce any work load and try and stay active when you can but don't overdo it and have good pain medication. Stay positive there are better times that help to counteract the bad ones. it really is a whole lifestyle change and family and friends need to try and understand this.
Hang in there. It can be very tough. There is a poor understanding of our chronic pain other than from your friends on this site who also suffer. Unfortunately everyones pain and symptoms are different but dont lose hope.
Hi! In my experience, the hospital has been pretty useless with me. I started to suffer what I now know were the symptoms of Fibro/Lupus at 4, I finally got diagnosed at 20 by a lovely registrar when I was under the Lupus clinic in London, they then swiftly discharged me back to my GP. I'm now coming up to 26 and have given up with my GP. I manage solely on Naproxen twice daily for the pain. I've started the NHS couch to 5 K programme on my good days to get me off my backside. I'm so grateful that I only suffer mildly compared to some people. I totally sympathise with your partner but I do agree that understanding how the fibro effects her body is the most important thing se can do!
dont think there any its such a complicated illness i have had it nearly 30 years, its just believed by many doctors even today i was told it was caused through long term stress. it started just after i was told my my husband had cancer and i had just been through major surgery on my back my daughter has been told her parkinsons may be part of long time stress i do a day at a time, self help and support groups like this help you manage when you may have flare up days
I was diagnosed years ago and it was pretty much the same told to go to my doctors and get prescription and that was that just to keep going to my docs so I see that nothing has changed. Well I wish him all the best and hope that his doctor is clued up on fibro as I am quite lucky as my doctor's mother has the condition x
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