New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
Are you in the UK?? and suffer from Fibro??
38 Replies
vlg - July 6

I am hoping that someone on here who also has fibromyalgia is living in the UK?!!!
All people I seem to see messages from are in USA,
I need to speak to anyone who has help with DLA or sickness from UK please
thank you vlg

 

hellou - July 6

Hi I am UK sufferer but do not claim DLA sorry can't help with that but just to let you know that i am UK and on here to. best wishes

 

vlg - July 8

hi hellou
i am so pleased to meet someone from the uk!! Sorry tho that you are suffering too!!
Everyone on here has made me so welcome and I felt guilty asking for a fellow brit, I hope no-one takes offence!!
best wishes to you

 

Wheeto - July 10

I'm in the UK! I haven't been diagnosed yet but all my symptoms seem to fit. I've got my second appointment with a rheumatologist tonight. I had one in April but they just put me on anti-inflammatories and told me to come back in four months. I've got so much worse since then that I can't wait til 20 August for my next NHS appointment so am having a private consultation to try to figure out what is wrong with me.

I mainly suffer from terrible aching and stiffness but all the arthritis tests have been negative and I don't show any inflammation. Doctors seem puzzled. Anyway I'll report back on what the consultant says tonight. Good luck with your treatment - as usual the research and understanding in the US seems to be far in advance of our own.

Thanks,
Laura

 

kathleen Paterson - July 10

Hi
I am in glasgow but not on benefits , I am working but it is a great struggle all of the time. Laura I have had many tests , but it is one of these mystery illnesses ,rule everything else out and you either have fybro or M. E.,. I too suffer great stiffening of muscles as if they have turned to concrete and chronic pain all over my body , unfortunately I seem to be getting worse . When I first took ill I went to my doc with a list of no less than 33 symptoms , many of them strange and weird sensations.
All tests I have had done are negative apart from A.N.A POSITIVE and underactive thyroid. I was told half the population could be A.N.A POSITIVE for no apparent reason.
good luck

 

lynda66 - July 25

hi, what is it you need to know?, i'm in the uk

 

Belinda Darrington - July 26

Hi there, yes, I live in UK - Cumbria.
I'm lucky, I don't have to claim benefit any more because, although I don't earn much, my partner brings in the main wage at the moment, so sorry can't help with that. I work from home as an artist - I couldn't hold down a full time job.
I believe I have had FM since a trauma as a child - I'm 43 now and have only recently been diagnosed with it, and that was only because I decided to list all my symptoms (nearly 50!) and take the list in to the doctor. For years now I've had all sorts of tests for all sorts of symptoms, and even an operation on my nose to try and sort out my dizziness (which of course didn't! - it was a waste of time!). Finally, when I put everything down on a single list, the penny dropped! It was blindingly obvious, but all the GPs I have ever seen have only ever foccused on one thing at a time, and have never let me describe all the other symptoms to them - partly due to lack of time in an appointment, and partly because I think they thought I was being a winger (I know I sound Like it here, but I'm nt really!)! And even now, all the doctors I've seen about it say I know more about FM than they due, and they don't seem interested in studying it. Some of them still don't believe it exists! There are no support groups around here, and no proffesional at all to talk to about it.

Sorry everyone for that explosion of p****d offness, but I just don't really have anyone else to talk to about it who understands. And so when I found this forum, I was so relieved that I could talk to other people who know how I'm feeling. Having FM in the UK is a very lonely and frustrating thing.

But I wish you all well, and hope that soon we will have a support system closer to that of our friends in the USA.

Meanwhile, if there's anyone else anywhere near Carlisle, I'd love to hear from you!

 

kathleen Paterson - July 28

Hi Belinda I am in glasgow . I have suffered this dreadful illness for 3 years now . When I first went to doctor I had the most horrendous headache , the pressure was unbearable on the back and top of my head. I was sent to hospital eventually as things just went from bad to worse. kept in overnight then had to wait 6 months for rheumatology appointment . When I went there I wrote everything down , there was so much wrong I knew I would forget what I had to say. The doctor said there is 33 things on this list there is no illness that has these many symtoms, they x rayed my head and inside my mouth , anyway coudnt find anything apart from thyroid underactive , which I was already on treatment for . Continous visits to doctor
he diagnosed chronic fatigue or fybromyalgia same thing according to him, he says your body is like a computor , the casing looks fine to everyone but your autonomic nervous system is out of control . I am plagued with constant headaches , muscle stiffening , vibrations , the list is endless . the only thing I can say is I had this 16 years ago and it went after a year , I did not have as many symtoms then though , Take care Belinda please mail me back and tell me some of your symtoms Kathy

 

Belinda Darrington - July 28

Hi Kathy, thankyou sooo much for responding! I've been feeling close to tears all day - for several days now I've had terrible pain in my shoulder and up my neck. It feels like someone is following me around with a knife stabbing me every few seconds in the back of my shoulder! I've also had tendonitis in my elbow in the same arm for weeks, so now my whole arm aches. Today I was so fed up and exhausted by it all, I just had to go to bed for most of the day. I tend to need a couple of hours sleep in the afternoons - I just can't stay awake, and I sleep really badly at night and am plagued with terrible, vivid dreams. When I saw you had responded to me, I was so overwhelmed to finally have someone else to talk to about it without feeling like a whining, lazy, hypochondriac! Thank you so much!! I get the same terrible headaches - it seems to come from my neck and spread up the back and sides of my head, giving me earache and making me nauseous. I've had them on and off for many years - I used to think they were migraines. Like you, I was admitted to hospital and kept in overnight for any test they could think of, which was quite frightening. I went to see the doctor about the headaches and pains in my chest (for the umpteenth time), and he told me to go straight down to A&E! Then they gave me an MRI scan, which showed I had slight damage to the base of my neck, but was told by some prat of a neurologist that he didn't believe that headaches could come from the neck. I also had emg tests for the numbness in my fingers. And all sorts of blood tests, which showed an imbalance in cortisol and other hormones? - I now appear to be having an early menopause too (43)! Also like you, I have an underactive thyroid, but this is because I had surgery for it being overactive about ten years ago. I'm just so muddled up with it all, I think I've figured out from my symptoms ( which had mostly been put down to depression) that it all started when I was about 9. I believe my mum and my brother also have it, but they won't listen to me. If it hadn't been for somehting telling me to list all my symptoms last year and insisting that I felt there must be a conection between them all, I would still be undiagnosed and banging my head against a wall! Even though most poelpe still don't understand and get sick of me moaning, I'm glad I know at last what it is - perhaps now I can stop beating myself up for being useless and lazy and learn to pace myself. With me, the illness seems to have changed and become worse gradually with each thing that aggravates it. I've just moved house so I'm feeling quite crap at the moment. It makes me so angry and depressed that we are not listened to or believed, even by the medical proffesion. My last doctor told me that they don't teach anything about FM in medical college, so that's why they still don't really believe in it. It was a new young doctor - keen to make his mark, that diagnosed it, but he had to google it while I was sitting there to find out about it and show me what it was,and even then, because it's all down on my records as being due to deppression, he said that the fibro was a complication of depression! There is no medical literature available on it. Now I've moved to Silloth, and have to start all over again trying to convince my new doctor that I have FM and that is why I have deppression, not the other way around, or that I'm imagining it, and being made to feel like I'm complaining about nothing! I'm so sorry for ranting on like this Kathy, but it's such a RELIEF to let it all gush out to someone who actually believes me!! Sorry too about my spelling - I've tried to correct most of it - I seem to be getting progressively dyslexic, having never been before! OK, I'll stop now!! Thank you again! Lots of love, Belinda.

 

Belinda Darrington - July 28

Oh my God, I've just seen how much I've written - so sorry for gabbing on so!! Belinda x

 

kathleen Paterson - July 29

Hi Belinda
you can rant to me anytime i feel exactly like you , you need somebody who knows what you are going. my doctor is very good but he admitted to me that they do not like telling folk they have this illness and then have to say there is probably nothing i can do to help you .
i was at him last week in tears , he told me that the illness was starting to depress me and gave me anti depressant which made me ill , i cant seem to tolerate anything as i a have a constant feeling of nausea. i have started back on the ones he gave me last year cipralex a mild dose to see if they can help with pain, as the pain seems to be getting worse.
I am 51and work full time it is a great struggle , i work in the benefits agency and my boss is excellent with me , days i have to leave early or i phone in as its just to much , my work keeps me going as i feel it take s my mind off all the abnormal sensations , recently i have been struggling more though specially with stiffening of my muscles and constant presure on my body it so frightening.
today i have pricking on the top of my head sometimes i just feel like screaming as i go by folk and they say oh your looking great have you been on holiday , the other night i was so bad with shaking i had a bath and put fake tan on ny face just anything to take my mind off things, nobody knows behind the mask the torture we are going through yesterday i must have a had at least 40 hot flushes.
well thats me had my rant keep in touch belinda
tkae care kathy
my spelling is all back to front as well

 

kathleen Paterson - July 29

Belinda i think my mum may have had it as well she used to complian constantly of pressure in her head and ears only to be told she had a hormone imbalance. and by the way you are not a lazy hypochondriac , you are suffering from one of the most complex syndromes
around and its abou time there was more research done in to it, when i had it 16 years ago i was told by a professor in the southern general hospital in glasgow , in not so mny words there was no such thing as chronic fatigue it was all in my head.

kathy

 

Belinda Darrington - July 29

Hi Kathy. You're so right, it's great to have a fellow sufferer to talk to, compare notes with, and learn from. I take it, from the times on your messages that you don't sleep well either. I wake up feeling really crap every morning. But I'm really lucky that I work mostly from home, so I can adjust to the day at my own pace. I have a collie with hip displacia (although I have read that it may well not be just humans that suffer from fibro, and she does seem to get depressed and sleeps a lot!) who is also not a morning person, so we snuggle up on the sofa and watch morning TV for a while. I have 2 dogs and 3 cats and I'm so glad I have them, they take care of me and get me through the day. My partner is a lorry driver so he's away all week. He tries to understand, and is very patient with me, bless him, but, as you know, if you don't have it, you just can't grasp the constantness of it - there's allways something that hurts or you're tired or ratty or withdrawn...It was worse before it was diagnosed as an actual thing though. Befor ehtta (that was meant to say "before that"!! I used to be so good at spelling!) everyone just thought I was always moaning or feeling sorry for myself over nothing. You're doctor has confirmed what I had suspected - that they don't like to diagnose you with something they can't do anything about, I also think their ego dosn't like to admit that they don't know anything about it - we are supposed to see them as demi-gods who know everything and hold our lives in their hands, so it stands to reason that they'd rather tell you it's something they have a good grasp of, ie depression. I have found it interesting to study it though, apparently it is hereditary, but it takes some kind of trauma to trigger it. Mine was emotional, at around 9 years old, and, oddly, I think my mum's was at 9 as well, when her dad died suddenly. I'm slowly getting her to admit that she has it - we've always had very similar symptoms, but she's of the opinion that she's learnt to know her body, and since there's nothing that can be done, there's no point dwelling on it. My brother refuses to think about it - men! As to anti-deppresants - because I was always told it was depression and anxiety, I've been on all sorts, but the only one that didn't make me feel spacy is Efexor (venlafaxine). I'm on that now, and it has definately helped a lot with the pain. I increased it recently because I knew the stress of moving would make it worse. I would take a higher dose all the time, but it makes me shaky, so I try to find a happyish medium. Do you think the menopause is linked ie hot flushes etc. I have had night-sweats for as long as I can remember, but started missing periods about 4 years ago, now I have gone seven months without one and suffer horrible hot- flushes. I didn't want to go on HRT, but I've been taking Black Cohosh for a while now and it has definately helped a lot. Ok, I'll go and try and summon the energy to do something - the good thing I do find when I have some kind of out side job is that you're motivation is better becuse you have to get yourself going. I'm at home all the time at the moment, and I do tend to slob about most of the day. I think maybe I need to find a part-time job. But I never fit in anywhere - poeple think I'm weird because my social skills are crap and I get very panicky. By the way, if you would like to email me, you can google my name and my website should come up (animal portraits) with my details on - it would be good to have an email buddy to moan to, and maybe we could even meet up one day, as we live not too far apart. Take care, love (to anyone else who may be reading this too) Belinda

 

Gabbie - July 29

Hi Belinda. I read your posts and can relate to so many of the things that you have said. You questioned the flushes/nite sweats and that is definately related to menopause and unfortunately can go on for a very long time. It will lessen, but I have found that I still get it especially when we have season changes (that makes the fibro worse for me too). Fibro can cause some depression, but gee wiz, with all that we have to go through, I think it's normal. However, I will say that it's important that you not let that get a hold on you because I think outlook is so very important. After feeling sorry for myself for a while, I decided to pick up the pieces and push myself to get going because I refuse to let the fibro win. I have some pretty awful times, but have found that the better my outlook, the better my days are. I googled your site because I was so interested in seeing your animal portraits. They are beautiful. I have been oil painting for about 18 years. I did a wedding portrait of my daughter and her husband a couple of years ago which I gave to them on their 1st anniversary. I also enjoy painting animals so I really liked looking through your work. With a talent like yours, I wouldn't give a second thought to anyone that thinks you are weird or questions your social skills. We are supposed to be a little "different" because we see things through the eyes of an artist, the details, the colors, the shadowing and the unbelievable beauty of things around us. And you know what Belinda, I think that's something that we can be happy and thankful for. Keep your talent going, even on the days that it hurts to hold that paint brush because you have a gift and you need to continue on.

 

kathleen Paterson - July 30

Hi Belinda i did e mail you dont know if you got it and gabbie is right your portraits are beautiful . kathy

 

kathleen Paterson - July 30

Hi Gabbie
I would just like to say I am 51 I have not had a period in 7 years I used to have hot flushes but they were long gone until I was brought down with this . But I think you are right menopause and fybro are not a good mix. i beleive this all started when I had a problem with underactive thryoid, anything I have read seems to point to thyroid disorder , my doc says my thryoid is fine on my present medication , but i just know i have not been right in 3 years, do yoyu ever suffer of pressure in your head ?
take care kathy

 

Belinda Darrington - July 30

Hi Kathy and Gabbie, Thank you both so much for your kindness and support. I think its wonderful how an illness can bring strangers together with so much love. I started the day feeling crap, but you have cheered me up! Kathy, I have emailed you - sorry I didn't respond yesterday - I was feeling too pathetic and gloomy! Gabbie, I would love to see your paintings, perhaps you could email some to me. Oils are a tricky medium - I've never quite got to grips with them. You're absolutely right about having a positive outlook, and the gift we artists have for seeing the beauty in everything. I'm always wandering around examining and sniffing and touching things, and it makes me feel like a child again. And I notice the beauty in rainy days and buildings and people, and try to see the positive in things that make other people moan. "Normal" people do think I'm weird, but I know it is partly an arty thing, because the one place I did fit in was art college. Everyone there accepted you for who you were, and rejoiced in the quirkiness of the way you saw things - the quirkier the better! I know I'm lucky to be able to do what I love doing. But I have always struggled with self-esteem and am crap at selling myself. Consequently, I've never been able to earn a living at it, and this has made my symptoms worse. About 9 years ago, I had a complete meltdown, and spent the days huddled in a corner rocking. But even that was a blessing, because I began to be very aggoraphobic, so I made myself sign up for a part-time art course to get me out of the house. I missed most of the first year because I couldn't get out of the front door, but I perservered and went on to take a Fine Art degree, and then a PGCE in adult ed'. Now I teach a bit too, which is something I never thought I would be able to do! So, I firmly believe that our struggles make us better, stronger people, who are much better equipt to help others. Lovely to speak to you, please write back or email me. Love Belinda

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question