i have been diagnosed with fibromyalgia and im not at all satisfied that thats all that is wrong i also have shown symptoms of rheumatoid arthritis the doctor told me a bit about fibromyalgia and i know that when the body senses pain the brain perception of that pain is far greater than that of a person without fibromyalgia and i have also been told that its now recognised as a disability now and i have had it for 26 years now and am mostly bed bound every day does that mean im disabled cause i could really do with some advice on this
Hi Derek. It seems to depend on which part of the country you live in. From reading some tweets quite a few people get Pip, personal independence payment, the old disability living allowance. But most of us seem to be struggling to get employment support allowance on the grounds of disability. All I can suggest is to try applying for them. They can be quite stressful to fill out as they remind you what you can't do anymore.
Ask your GP to refer you to a rheumatologist if you don't already see one.
They can do blood tests for rheumatoid arthritis.
Take care
Good advice Janet. I would also try to get an overall assessment since, it seems that you'veen long term suffering from this it may have a viral or infectious origin.
Take care. T.
Hi Derek Firstly I feel for you being bed ridden, thats happened to me 3 times in the past 3 years I needed carers in to look after me. I have fibromyalgia ME and other health conditions mobility isnt good. I get PIP and am now classed as disabled. A rheumatologist diagnosed my fibromalgia he can also diagnose if you have rheumatoid arthritus. If you havnt already I would try claim PIP get CAB to help you to fill in the form also your gp could write a letter supporting your claim as mine did. Also my rheumatologist sent in a report also. Any hospital appointment letters would also be of help any information you can send to help your claim. Their is also ESA I havnt tried to claim ESA as I found rying to claim PIP stressful enough. But you could try claiming that also. If you are needing aids etc your gp could refer you to social services and I think its called ocupational health. go on the nhs site they explain about fibro also you could see if your area has a local support group.My gp is always my first port of call as she gets me any help support I need.fibro is based on pain apparently we are low on certain chemicals in the brain. fibromyalgia affects the whole of our body with many symptoms. take care
thanks i havent tried esa yet as i was on that before my diagnosis and they took me off that i appealed but they dont seem to care but now i know its fibromyalgia and ibs plus me they cant disallow it as i have researched and it turns out it would be illegal for the dwp to not allow it and to put you in the support group the thing i got told was its reversable and can be cured but the problem with that is no one knows the cause of it so how can you fix what you dont know for me i know its a life long thing but im ok with it and im bed bound every day in constant pain the pain puts me to sleep but at the same time it wakes me up i only get about 4 hours sleep as im in constant pain i feel so low cause i cant even play with my near 3 year old even getting up to go to the loo is exhuasting and sometimes i cant even make it there my doctor is a nice guy he understands but the dwp dont i have put a claim in for pip and have seen atos they where quite understanding and i know 100% if the dwp say atos recommends that they dont award me pip then i know the dwp have lied cause thats all they do when i had esa and had my assessment i was awarded 0 points by the dwp and they also said i got 0 points from atos as well but when i contacteed atos they sent me there exact report and on it i scored maximum points the dwp are just inconsiderate liers so i will be seeing the cab to contact pip to inform them i will be getting my diagnosis letter to them plus a letter from my doctor to support me and to hold off on there dicission until then and i will be goping to my local job centre to fax the letters over so they will have them there and then but its not fair that i have to put myself in even more pain just to go doown there to prove that im not making it up when its the dwps job to do that
i have done all the tests but nothing the rheumatologist hasnt rulled out rheumatoid arthritis but hasnt yet been able to confirm it is or isnt but he said fibromyalgia is a certanty and diagnosed me with that i have gone for pip but esa is a pain here but will get the cab to help me and all i want to do is go back to work but i cant as im bed bound all day every day in constant pain and mobility well thats a no no as when i get up just getting out of bed is to exhausting and painful but the dwp just dont care they never do si i will get the cab to help me out on that cause i cant do it alone yet alone cope with the forms as i would have to remmeber the person i once was and its to depressing to do it alone thanks for the advice and for being understanding and you take care to my friend and stay in touch as i have found it usfull talking to others and it seems like the only people who understand truly is us (people actually going throuh it) so thanks again my friend
Hi Derek. I was told by my last rheumatologist that if I had been referred in 10 years they would know exactly how to treat fibromyalgia, but there would be no cure. That was 2 years ago when they discharged me as at that time there was nothing else they could do for me. I now only see my GP and keep taking the pills, not that they work that well and the heat has been unbearable this last few days. I have 1 finger that I can use to type at the moment. I to took a long time to come to terms with being diagnosed with fibromyalgia. I lost my job through being diagnosed, although the diagnosis came after my employer terminated my contact. I have had nearly 3 years to come to terms with it, but it still hurts sometimes, especially when I try to do something that used to be so easy. Take care and gentle hugs 😊
Hi derek when I last saw my gp she said to me you do know their is no cure for fibromyalgia dont you. Their is no cure the only thing we can take is medication to help with the pain, some people try accupuncture massage hydrotherapy, I use hot water bottles wheat bags. Its very much trial error to find what suits you. where DWP are concerned the more you can send into them gp letter supporting you rheumatologist any hospital appointment letters as much as you can to support you and also your local CAB will help with form filling and advice. It wasnt ATOS i saw but a different company, I have heard bad reports about atos and how they treat people and lie. Sleep and lack of it is a big problem with having fibro, I dont know what its like to sleep and the conatand pain does ware you out. My gp tlod me I had ME, ME can run along side of fibro the best person to talk to about any worrys concern is your gp.I would get CAB to help with your claim for ESA again.take care
Hi Janet its soooooo hard frustrating when your unable to do the things you use to do. I am having trouble with my hands fingers my thumb wount bend and is very painful. its stuck in 1 position my earache has eased thankgoodness but Ive now got terrible pressure in my head its never ending? I would anything to have 1 good day no tablet Ive taken has helped me. Im just using hot bottles and wheat bags take care gentle hugs
thank you for your support and advice it means a lot to me and even though i have this for life at the end of the day i feel like at least its given me good friends like yourself and that means a lot to me and you have helped me to accept it so again thank you so much for that as im no longer in denial which is a good start now its a case of getting the right treatment and help for it i will see my doctor tommorow to see about getting some kind of support like a carer just to help take the weight of my wife as she does everything for me and i feel like such a burden to her but shes amazing and i love her so much but it would be nicwe for her to have a break like i said before in this message thanks again and keep in touch my friend and let me know how you are once in a while take care to my friend
Hi Derek we are all in this togeather, we help support each other through, dont ever think your alone we are here for each other take care gentle hug
your not alone to as im always here for you to and will always be a caring friend to you and thanks for helping me accept all that i have accepted today cause without your support i would still be in denial so thank you from the bottom of my heart lots of love to you and your husband from your new friend forever derek xx
Your welcome Derek Im here for you, so pleased I was able ro help you. you take good care of yourself rest plenty onwards upwards gentle hugs. love to you and your wife from your new friends karen dave xxxxx
thanks to yoiu both lots of love and hugs from derek and sharon xx
we are no longer the people we used to be all we can do is accept it and adapt to it the best we can but most importantly just take each day as it comes and im here for you we all are everyone in this disscussion are here for you your not alone from your new friend derek xx
Hello derek1979, I to have had to put up with painful aches, terrible pain, swelling and even bad head turns that have me on the floor gagging and disorientated. Brain like a swiss cheese most days. After a MVA I was let undiagnosed etc for a few things and left to just get on. Work for me was a not go, yet I struggled to try and get there most days, otherwise it was pulling over in my car to practically brain dead from fatigue trying to get there, and other days I couldnt get a leg out of bed...
The 1st best thing is to get to the point you have the best info (forever evolving with the medical realms), and next best thing is 'Accepting' the medical issue, and then learning to push through most of the pain on days you can. Learn strategys that help you to stay out of the bed at least. Try to minimise how long you remain prone.
I have full blown, full body Fibro from head to toes... It's been a long hard journey for sure, BUT I constantly push and push, not rediculously but mentally to identify what I can do, when and for how long, and how long before the issues get out of hand. I use baths to try relaxing the body... massage oil myself as best I can. I'd love full body massage but no way can I afford it. A massage at least twice a week would certainly go along way to help. Accupuncture doesn nothing for me. I do gently stretching and exercises in a warm pool on occasions. Even when fully in pain with swollen legs, feet and ankles I try to get up and walk small distances round the house at least, or push to walk somewhere. Embarrassing I know, sometimes as I do walk funny, but who cares really....At least I'm doing it. To me the Heart muscle and lungs still need to work.. Building up the Head muscle to cope and sometimes block out some pain is another thing useful. It takes time but folks, it can work. It's like self hypnosis. And it helps enough to get you out of bed to the next room or to make a cuppa, or to even get up walk to the next seat. It's been 17yrs for me... from days and days in bed to pushing myself and teaching myself.. I'm not reliable at all for getting out to actual paid work, which I'd love to do, but as I still need to do something, I took up Oil Painting 5 years back.. It helps focus past pain for an hour or two here and there. Other folk take up crafts of various sorts, helps take their minds off things. Some folk are still able to work reduced hours. All depending on their level of pain and stiffness etc and if they have good bosses or self employed. Also depends on those major 'flareups'.. and how often. I'm in a constant state of pain, pushing through and 'Overdoing things', does create major swelling, stiffness and chronic pain...tsk I try to avoid this, but it happens, I'm used to it. BUT what is the hardest thing is dealing with 'The System'... Our Work and Income system and our Health system. NOT every doctor here in NZ is understanding, or 'knowledgable' on Fibro. Our Govt budgets don't allow much leeway for us folk either... It is cruel....cruel to be ignored and left struggling to live... and I mean to live. All the very best derek1979.. Feeling for you... I hope you can find strategies to help you cope... Healing Hugs
Hi Kaz. How are you today. It has cooled down a bit here. But its still very muggy. I'm still very sore, but need to get knitting as I am trying to make lots of matinee clothes as my daughter is due to have our first grandchild in November. Need to be better for tomorrow as I am taking them for her next scan. It's 3 buses for them to get to the appointment.
Think I may need to try and have a lie down this afternoon, I didn't sleep very well last night, had about 2 hours in short bursts.
Gentle hugs. Take care x
Hi Janet bless you for asking how I am. My earache has eased thankgoodness. it started in my right ear on sat so had it in both ears along with a funny throat. Then yesterday I started with pressure in my head and a headache. I got about an hours sleep last night. Im lucky to of got that?. The earache has gone along with the pressure in the head thankgoodness. I am in pain with back legs hands fingers, but ploding on the best I can.How are you? hope your not in too much pain. I agree with you I would have a rest this afternoon as you didnt sleep well last night. How lovely your 1st grand child I bet your excited I know I was when my eldest child had his daughter. My mum knitted matinnee coats for my children and her grandchildren.I wouldnt like to do the 3 bus journeys, tomorrow is going to be a tireing day for you. so I would rest plenty today. take care gentle hugs x
Hello derek, and welcome to the Fibro club. This is a good place to be, and very helpful and friendly. I were diagnosed with our friend Fibro 4 years ago now. And 3 months ago, were told I have ME too. Great fun! I also have an Underactive Thyroid. Today, I am in extreme pain from head to toe. And wish the ground would open up and take me through. As no amount of morphine or heat pads and hot water bottles will ease the pains for me today. I have to go and lie on the bed for a couple of hours each day as I am so exhausted. Sorry for the rant, hope you are having a reasonable day if you can. Chat soon
Hi Anne I have ME like you and an under active thyroid, I wish I could wave amagic wand over all of us.so sorry your in so much pain today hope it soon eases for you just rest and sleep if you can thinking of you take care gentle hug