I have a very close friend who has recently been diagnosed with Fybromialgia. She has been suffering with pain for years, I believe it started when she was a kid but she was never diagnosed with Fybromialgia.
Unfortunately hearing the Fybromialgia diagnosis news this week has been quite hard for her as she's been reading up that there aren't any cures for Fybromialgia and even the treatments offered by the NHS like pain medication don't really work for her. She feels that it's just going to be a bleak future for her and she is just going to be a burden on others as she is unable to work due to the pain.
So I wanted to reach out to the community here and get advice from people with Fybromialgia in terms what treatments they are on but importantly how do they cope with Fybromialgia on a day to day basis. Also were you be able to go back to work while being on the treatments etc.
Also are there any Fybromialgia support groups that my friend can join?
Thanks in advance for all the help and advice.
You all are amazing
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Hi. I have had fibramyalga for 8 years. I take amytriptolin. Its standard for fibramyalga patients. It just helps me cope a little better. Whist on a flare up I rest . When the flare up has eased I try to get some exercise. Don't push to hard learn your boundaries. Swimming is best for me. Try not to dwell on the bad days and remember the good ones. I am currently working part time as just had a cervical cancer diagnosis. I also have osteoporosis in my spine. I won't deny that I have really bad days but I take myself to my happy space. For me, this is a little island we're I can do whatever I want. I can even fly lol. Have a really good healthy diet that makes a big difference. I hope some of this helps tour friend
Hello, first of all I would like to say, what a wonderful friend you are. One of the most isolating things for people with Fibromyalgia is the lack of understanding from others. The fact that your friend already has someone trying to understand this awful syndrome is an amazing thing, well done!I was diagnosed with Fibro last year after many tests and it really is difficult to come to terms with. Like most others I have gone from being wonder woman to barely being able to move some days from the pain and stiffness. I now work PT (3 days) and I'm OK with this. With Fibro you have to learn all about pacing, know your limits and set boundaries for others who have perhaps come to rely on you over the years. You really do need to put yourself first with Fibro because if you don't, you are no good to anyone.
For me, managing my fibro is all about exercise, sleep and rest, mindfulness and gratitude. I only take pain relief on a really bad day (cocodamol, naproxen or ibuprofen)
There are lots of helpful and knowledgeable people in the group who will be able to share their experiences with you.
Hello, sorry to hear your friend has joined this team of sufferers. I had a split feeling when diagnosed with fibromyalgia, some relief that after the years of unknown (as that in itself was draining me) then the lost feeling, What do I do now? 15 yrs on, like everything else you manage it.One thing that did help me and only in the last 5 yrs was finding out about Pain Management department at the Hospital, (GP did not mention it) This department introduced me to a group, we jointly discuss ways to improve your cognitive basically the way you think about pain? Ok I am the best sceptic when it comes to something that is not physically tangible but I was proved wrong, cognitive or your mental state with handling this condition will help, it is no cure but negative thoughts produce negative reactions, Its worth a try, CBT is a good start.
The other thing I learnt despite my GP saying food had no bearing on the symptoms, I stopped eating my great desire of crusty bread, so no bread, rice, pasta, no grains basically stopped the IBS issues and opened my mind to a whole host of other carbs. This may not work for you, it is a trial and error. Don't give up, it is a trial, as they say no pain no gain.
Be mindful most of the info to help you probably will not come from the NHS, or your GP or any specialist, As a Doctor only reminded me last week manage your expectations when you looking for help from the NHS.😒😒If they do help you its a bonus😊Push for your neurologist if you have only been seen by a rheumatologist, if you can treat some of the nerve pain. magnesium chloride spray does calm my irritable legs.
One thing is for sure you will manage the condition in your own way, takes a bit of patience/frustration but you will find some comfort once you try things for yourself.
I am also really pleased to hear that a friend is understanding of fibro, even my family struggles to relise how painful it is on a bad day. It can be an isolating condition to have. I also have cut out carbs recently and has found it really does help with alot of things., especially pain. But then I have not been to any pain management clinics. I am unable to take any ibrofen or nurofen because of my astma but can take cocodamol but it makes me sleepy, so at present working semi part time taking tablets that makes me sleepy is not an option. I have neen coming to terms with it fir a year not and just starting to learn to pace myself. I wish you friend well, people on here are so helpful.
I was like your friend. On hearing the news I came to find out more and discovered people who were bedbound, wheelchair users etc etc. it seemed so bleak. Yet fibromyalgia isn’t the worst diagnosis as every day is a new day. Some days are bed days others are going out. I’ve had to learn to listen to my body, to pace my activity, to limits the stairs but I have learned to adapt. I’ve developed new things by working with the pain management team (Torbay Hosp has videos under pain management service). I sit in bed doing creative art projects that I never had time for, I listen to Audible books as reading is too tiring but I get through way more books, I do a wonderful meditation that takes me into nature using an app called Synctuition through a pair of headphones I treated myself too which cancels all outside sounds out, I have the calm app to play soothing music, plants & flowers in my bedroom. Yes my sleep is awful but I no longer worry but accept it, I’ve had major flare ups & got all the disability grap rails after learning the hard way but I use them when needed, I have a Blue badge to make life easier if I go out, I have a wheelchair & I allow my partner to help me. I thought I could do it all alone. We went to a car park & I couldn’t push myself as my arms weren’t strong enough but I use it when I need it and walk when I don’t. We sit in the car & listen to the sea, I used to walk miles. I’ve found heat pads & massage help, I have a soft throw to sleep with as a duvet is too painful. Yes I have pain daily but I work from bed doing something I love. Without fibromyalgia I wouldn’t have done that. It is a tough path to walk but it’s the people around you who matter most. I have a friend who knows I can’t do what I used to so she comes to mine for coffee and I really enjoy that. It took me a long time to get through the NHS system to people who helped me change my attitude to how I thought I had to live life. But whilst it’s a diagnosis I’d rather not have, and there are bad days, there is a life living with it. My biggest change came when I became willing to accept the diagnosis and choose to live life in a different way allowing help from others rather than fierce independence. Do I dream of walking my dogs daily in the beautiful sunshine - you bet. Now I am considering renting a scooter to see if that would work. It’s 4 years since my diagnosis & it began in 2004. You are a wonderful friend and that is the greatest gift you can give your friend. Xx
Thank you Butterflybeauty for all the advice and for also explaining what your day to day routine are like. It's great to hear both the positive and the negatives and more importantly you've worked around them
Hi and welcome, you are being a great friend and having support is so important when you are dealing with fibromyalgia
There are many things your friend can try, and while medication does not work for everyone it can help some. Pacing, exercise /activity, heat or cold, holistic therapies, talking therapies sich as cbt/act, mindfulness, meditation, distraction can all help to manage symptoms
You can find FMA UK information booklets at fmauk.org/publications
If you drop me an email on head.office@fmauk.org with your friends postcode or town, I will check for support groups nearby
Hi Hazel_Angelstar , Thank you for taking the time to reply back with all the information above and for also helping me find support groups for my friend, I've dropped you an email
I don't take meds for fibro as they don't work for me. I do a lot of exercise though, HIT classes everyday and kung fu in the evenings so having doesn't necessarily mean you are bed bound. It effects us all very differently, I have lots of pain and stiffness but I find exercise helps it.
Hi Cat00 Thanks for taking the time to reply and for the advice. I do believe the meds aren't working for her atm (especially the pain meds). It's good to know that exercise helps.
Meds can be a double edge sword, they have lots of down sides, weight gain weird side effects etc and they can complicate the picture. You can think its part of fibro but actually it another side effect. If I can get away without meds for fibro I will. I have other illnesses like chronic migraines which I'm very medicated for already. Having said that they can be a life line for some.
Exercise for me is the only relief but again for others exercise can be crippling. It's good for your friend to realize they may find they can exercise a possibility but to not berate themselves if they can't.
It seems more common for fibro people to have flares of the condition but i dont have flares mine is constant. Like I say everyone is different. Most people talk about the importance of pacing, this is not something I do either, I'm just not capable, I'm an extremely highly strung person. 😊
This is a Fibromyalgia support group, and if she looks on the GPs noticeboard she might find a local face to face group, Another place to look is the library, where they often have a list of organisations as well as a noticeboard.
It can be a difficult diagnosis for someone to hear, especially when young. She will need emotional support too, so it's good she has you as a friend. It can be a distressing condition with the limitations it puts on you.
Encourage her to join this group, we are friendly and supportive.
Another thing to look up on the Web is The Spoon Theory. It will help her understand how her energies deplete though the day, and why she can't always get out and socialise.
Sound like she already has a good friends already supporting her. I believe you can find local support groups (local church will know who where these usually run) - good idea to look into myself as this is a lonely syndrome to have x I would encourage her to find pros (think of how many good books she will have time to read (in sunshine or cosy sofa) maybe join book clubs too or online learning groups to take focus off Fibro. I have banned friends mentioning the word pain as it takes up enough time already.
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