I've just joined this group as I recently got diagnosed with fibromyalgia and it seems a bit overwhelming sometimes. Therefore, I wanted to learn more about it and also hopefully get some tips and insight in how other people dealing with it. I also live in London, Clapham to be more precise, so I was wondering if there was anyone else around here/London? Would be great to talk to people in the same situation and share stories and advice.
Well, here's my story:
I have been struggling with chronic fatigue, muscle pains, jaw tension, stiffness in my neck, headaches, nausea for 4 years, ever since I had glandular fever during summer 2013. Since then, I have gone to the GP without much help, feeling helpless and feeling like somethings been wrong with me, and it came to the point I thought it was normal to feel like this, and I shouldn't let it affect me and just "push through it". I later requested to be sent to neurologist and rheumatologist this year, and just got diagnosed with fibromyalgia. Now I feel like finally the pain hasn't been only in my head, which I thought for a while, but also I am trying to figure out how to live with this.
I am a self-employed singer-songwriter and work part-time as well. I have been a very active person throughout my whole life and in my younger years, I trained to be a professional athlete, but now feel like I can't do anything which is so frustrating. I am a high-achiever, and only go 0% or 100%, nothing in between. Therefore, I am now struggling to find out when I should rest and hold back, and when and how I should exercise. Since I am a musician, I also find it very difficult to be inspired and write music when I'm in pain, and also loud sounds/noise makes it worse at times. I am a positive thinker, and feel it can only get better since I finally know what has been going on with my body, but it is all a bit overwhelming atm since I got diagnosed middle of September 2016.
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solvemaa
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Hi solvemaa and welcome to the forum, Im sure you will come to love it as we all do. Im sorry you have been diagnosed as having Fibromyalgia and so young, Your story is so much like others, in the fact you waited a long time for the diagnosis.
It is difficult to take all the information in at once and takes time to come to terms with it all. There are lots of things you can do to help your condition & you do have to learn to pace yourself, this is one of the most important thing to understand with Fibro.
Anyway you have definitely come to the right place to chat learn from others experiences. In the mean time please go check out the main site, where you will find lots of information and useful links and I look forward to chatting with you.
Thank you so much for such kind words! Yes, it's a bit overwhelming atm, but it's good that I've finally got a diagnose so I know what I can do to help and as you say, find my own pace.
I know exactly what you mean honey. I remember I was actually relieved when I finally got diagnosed, it was like a big weight lifted from me, our minds play havoc when we don't know what is causing us to feel so unwell & have so much pain. The problem is that a lot of Fibro symptoms can be not unsimilar to more life threatening diseases so it's only normal to believe we have something more sinister or even a rare desease & nobody knows what it is. I remember having so much worry not knowing what was wrong with me.
You will get there & you will get lots of support from all our lovely members here.
For me it was more that I thought it was normal, so I didn't complain cause noone understood, so I thought I just had to live with it. Very frustrating, when I had 7 hours of singing every Monday, and 6 of them in a small room with the band, which is not even good for a normal person..! So that's why it's worse atm, and I'm no so happy to have finished both my degrees and working part-time and can work around it. The only big downside to getting a diagnose, is that I always though it was only temporary, but then I just figured out that is permanent, which is so freaking awful..! I just can't accept it atm.. But I have ok days as well, so I guess I'm luckier than lots of people around me that has fibro X
Yes I know what you mean, I was the same & i just thought it would go away but No, its always there & as you say, in a small room for all of that time can be extremely difficult for anyone. To long , can you sit ?
I'm luckily finished with my degree now, so I can regulate it myself, but it was completely ridiculous! But at the time I didn't know I had fibro, so they didn't understand why and didn't want to listen, I didn't know how to explain it. But all is done now x
Welcome to the mad house. So very sorry you have been diagnosed with Fibro and at such a young age. I don't live near you angel so can't help there and someone from admin will be massaging you with the link to info on our mother site. There is always someone here to listen 24/7 so ask as many questions as you need to. I wish you luck and hope your life does'nt have to change too much. Take care x
Hello and Welcome Solvemaa....So glad you found us as you will reap loads of info and ways in which to live with this horrible condition...I am sorry you are so young as well...You can ask anything (well almost!) and we will try to be helpful, informative, supportive and funny as well....We all have to have a sense of humour as its one way of coping. Sorry I don't live near you I am in W.Sussex but I have a friend on here who lives in Tasmania and we talk often (we PM (personal message) each other which you will find out about as you go along...I hope to hear from you again....re. music!!!! I found during my worst times I lost the art to do watercolour paintings...I am trying very hard to bring that back as it so relaxing as I am sure you found your sing writing....Keep trying and gentle hugs to you xxx
haha "almost"! Thank you so much for you reply. Yes, I think it would just be useful to talk with people that has the same to share the everyday struggles rather than trying to explain to people that doesn't understand it. I go through days where I don't even want to listen to music and producing sounds would be the worst. But sometimes that it was get me up in the morning etc. I should actually write a song about this shit..! Haha xxx
What a wonderful idea...our own song..we can become a choir and travel the country to raise money for Fibro....small problem travelling is not good for us!!!! Oh well, seemed like an idea....xx
haha yes, maybe you can even watercolor the cover of the song! One of my singles have a cover that a friend of mine painted, so this could work! Could do charity events/gig for fundraising x
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 am so genuinely sorry to read that you have been suffering and struggling so much, and I sincerely hope that you can find the answers that you are looking for. I personally have had to learn to pace myself in my daily activities as it is so easy to overdo things and end it pain and with fatigue.
I want to genuinely wish you all the best of luck, and please take care of yourself.
Welcome Solvemaa, I.m known as Nurse Gladys Emanuel from (open all hours) hence the mug shot! A retired theatre nurse with fibro OA calcium crystal disease and some gastric reflux problems at present... That's me introduced. You are so young to have fibro and with such an active life; like me; seeing it gradually slow down! It is something we all have to accept with fibro otherwise sufferance can be debilitating.. I would have hoped living in the heart of London there would be some facilities for you to have therapies to help you cope at such a young age, ask your g.p about occupational therapy, hydrotherapy (highly recommend aquatics) and some physio input, you might have to travel to get these therapies (I do ) but they will help especially if you like athletics, I used to teach "strictly" I worked my way to an I.D.T.A (international dancing teacher assoc.) and now can only do short bursts but I do find some of the movements do stretch my muscles, as an athlete you must be aware of how to stretch muscles-- just go at 10 minutes per day at first, if you overdo it the fatigue will hit you hard! But I highly recommend you find some hydro and if you find your finances are suffering because of fatigue then speak to our Janet on Forum she is a hive of info on getting help.. Good Luck stay in touch and have as much of a moan as you need we all do!
Yes, it is very frustrating and sad to see it slowing down, and I'm not ready to accept it, I just can't.. I'm a fighter and new challenges, but this is not a battle I have chosen to fight myself. I do go to the gym because I've promised myself so and the fighter in me comes out, but this is a challenge I don't want to take on and can't accept atm.
However, yday, I asked the GP to refer me to a Fibro clinic and I've got a physio appointment next week (not sure if they will be specialised in FM tho, we´ll see). So I'm actively trying to do something about it, but I just can't take it all in just yet. Probably would be good to talk more about it, I guess.
Thank you so much or you advice about hydrotherapy and stretching! I have already started to focus more on stretching, but I'll try more now, and also research hydrotherapy. And also, thank you for your advice to contact Janet about for more info, is that Janet28 you're talking about?
Hi again, glad to hear you are going to get some help, whatever you do don't, poo poo anything specialists advise , give it a try first, we all respond in different ways to therapies,, most physios have fibro knowledge and if you find the one you go to hasn,t then ask to be referred to someone who does even if it means going to a different location.. About "Janet" I,ll get Bluemermaid to give you correct Janet as we have a few on the Forum. Good wishes to you,
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