diagnosed with fms three weeks ago but going on for years

sorry not been on but had a lot on lately..got my disablility allowed for mobility but not care so have had to do a appeal letter stating how i cant cook shower or on somedays cant get out of bed at all.. my shoulder/arm/hand and feet are very sore last few days so finding it hard to

do anything due to the pain it seems to over take the brain. still not heard from rhem, that must be about 18weeks now. had O T out today to see if i can get a trolly to help me wheel it through from kitchen and also a armchair to help me get up and down so will wait and see how that goes she said she has to put in a special report to see if i can get those aids. im really fed up at the moment feeling as if i dont have a life..its my 25th wedding anniversary in august and i feel i cant celebrate how i wanted to because of the pain and fatigue i couldnt cope with a party. so im off to try more pain killers as im in so much pain i have had nothing to eat today.. though i still dont loose weight..sad eh..anyway hope u all are having a better day today or even tomorrow.... di xx

Bless you :cheerup: I get L R C and no mobility component? and yet I am in pain 24/7 forcing myself day in day out to function!!!! My assessor written I was unable to make an evening meal? and yet I can hardly walk with ease on a good day!!! I do not understand how these people make the decisions? anyway hun I was reading about hormone levels today and there is suppose to be some link to fibro and when these levels are high the more pain we get? due to an imbalance or something??? Don't know if this could help you? perhaps your GP may know?

I have had a very sore neck for a while it goes into my shoulders into my breasts somehow and it is driving me nuts!!! doctor said they were both lumpy and the nurse is to check them next week? My hip is piercing still but I feel I have just got to plod on the best I can, I haven't been out today due to the pain! not even to the local shop with my son, pushing the buggy!!!

My friend in America mentioned that Lycra is suppose to help fibro sufferers but I haven't mentioned this to my GP as he hasn't got a clue really about fibromyalgia, so I am waiting to mention this to my Pain Specialist in August? Gabapentine that I am taking isn't working so I have just to plod on till then - nightmare :roll:

Anyway hun I hope your bad flair or bad time you are having gets bearable, I always seem to be at my worse when the weather fluctuates which it has been doing! :evil:

Take care hun, fingers crossed you will feel much better for your wedding anniversary! :cupid: :wizard:

I am so stupid. Been checking on site to see if I had any reply from you. Didn't see there was two pages.

Hope you get your bladder problem sorted out soon if it so annoying. I did try some tablets detruisol I think thats what they were called but didn't seem to do any good. Don't take anything now but do try the bladder training.

Always wanted to go to the theatre but bladder stops me as I would need to go out too much. Then you feel to embarrassed in keep going out. My legs would ache as well. I also don't like being shut in and think this has come from having radio iodene treatment for my cancer. I had to be isolated for about three days in a room on my own with heavy steel doors. Only saw a nurse fleetingly and had no visitors because of radiation. Did have a telephone to speak to family and friends.

Think mine might have been bought on my trauma of surgery had two have two ops. Had thyroid removed completely. Been eleven years now and I am well. But my problems all seem to start from after then.

It is good to talk to someone who can understand and they can reply back to you and get rid of their worries.

Hope you get things sorted soon.

Keep going.

Jane Amy x x

Sorry to read you are having a really bad time at the moment. I hope your pains get a little easier. It is not very nice not knowing how well you will be if you have a special occasion coming up. I hope you do get to celebrate your Anniversary in August. Maybe if you do not feel well on the day you could do something special on a day when you are well. Have you organised a Party or were you doing something at home.

I try not to take to much pain relief if I can help it. I just take paracetomol at the moment. I am waiting to make an appointment for physio at the moment. Thought give that a try first before going down tablet route.

I have to take tablets for other conditions so just wanted to get away from taking too many tablets at the same time if I could. See how physio works out though. Will maybe have to have some stronger pain tablets in time!

Is your doctor helpful and understanding of your pain. Everyone is different with their pain threshold so we don't all experience the same pain. I am probably lucky that I can deal with mine at the moment but might come a time when it will get to me more.

Have you heard of the spoon theory! Lets say someone who is well has Twenty spoons for the day. So for instance when they go shopping, do the gardening and ironing they might only use one spoon. But if you did all those same things because of how you are feeling and your energy you would probably have to use at least five or more of your 20 to do what a normal person does in a day. So you have to think carefully what you will do with your five spoons because that is all you have for a day and when they have gone there is no more left.

I am not saying we are not normal we are but we have to conserve our energy and time to do what is important to us. I have good days and go mad and do to much. I then pay for it a few days later. I really do need to pace myself a bit more.

Sorry about going on and hope some of it makes sense and helps you.

Best wishes and have a good anniversary.

Jane Amy x x

I wondered how you were? was it thyroid cancer you had? as I have an under active thyroid and that always seems to bother me? at the moment I have very tender breasts (both) and I have to get them checked as they have been like this for sometime, doctor checked them last week and said it could be hormonal but the nurse is to check them again???

I am so sick of feeling like a pile of used newspapers as all the content annoying....... pain moving around and the weather not helping!!! I do hope you Di and Jane amy are having a better day than me?

Take care everyone xxxx :cheerup:

Poor you hope things get sorted for you soon. It is really frustrating. Always seem to be one thing after another to contend with. Yes it was thyroid cancer I had was shock at the time but I was very positive about the whole thing. Although did have my down days like now.

Will be thinking about you when you go to see nurse about your breasts. Hope they find out for you whats going on. I had a routine mamogram last year when I was nearly 51. Then had to go for a second as they thought something was the matter. Was really worrying at the time having had cancer before but luckily it was all ok.

The weather has been making me feel so tired and pain worse today. Been a damp miserable and a little rain.

Do you take thyroxine for your thyroid. I have to take 125mg a day for life. I have to take a higher dose than normal to stop any cancer cells recurring.

Take care and try to be positive. Easier said than done I know.

Best wishes

Jane Amy

thanks for hoping i can celebrate my anniversary we are suppose to be having some people up to my house as i cant cope with a hall with lots of people. i have been feeling really sorry for myself the last few days, im in constant pain all over at the moment and the fatigue is playing up though im not sleeping well as night.

im so fed up annoyed angry and sad that i feel like this everyday, if its not the pain its the fatigue. im very stressed at the mo my dear friend has ony weeks/months to live and im devasted. i need to go back to docs i feel they have just ignored me as i await my rheum app. none of my meds are working now im on tramodol, diclofenic, paracetomol all together.

hope i have not depressed anyone more than i am and i hope that ur all getting some relief from the pain.

take care xx :love:

Well I am on 175mcg of thyroxine and have been on this since 1998, it fluctuates from time to time also so I have to decrease or increase my dose!!!

Yeah the damp weather has been a nightmare I feel 75 not 35 and my little 2 1/2 little boy just wants to play!!!! nightmare but he lifts my spirits with the giggling his does!!!!

I am so sorry to hear about your close friend Di, at least you have time to say goodbye and spend as much quality time with him/her as you can, I lost my cousin about six weeks ago suddenly and she was 19 and still to this day they do not know why? devastating totally for all our family the worse thing is coming to terms that we didn't say goodbye all we could do is console ourselves on bebo somehow? life is cruel!!! Say everything you need to say Di make the most of the time you have, You probably doing this already, this doesn't help fibro sufferers to as the sadness seems to penetrate into your skin, burning toothache, I have all sorts of extreme pain too after my cousin died, I have only started to feel at a level this past few days apart from my breast can't bear them to be touched and cant sleep on them and none of the meds work so waiting to see pain specialist.

Take care xx :rose: :love: :rose:

I know what you mean about doctors not giving you the support. I didn't get the support from my drs. after being diagnosed with osteo in my toes. Saw rheum twice and he basically said go away and live with it. He never saw me again and my doctors didn't follow it up. I went to see a dr at the surgery as had pain in my arm and didn't think it was arthritis. He thought it was and he was so rude and said we all get aches and pains go away and get on with it. I came away really upset and wrote letter to practice about him. I saw what he had written in my notes and he said that I was obssessed with my joints. So I took my complaint further. Didn't get anyway though but made me feel better. This must have been part of the fibro at the time.

This went on for about five or six years until I changed my gp at the surgery. I was lucky to find one that had time to listen to me and take me seriously. It is worth changing and seeing a different one if your own isn't taking notice. I was really relieved when at last they could put a name to what was going on with me.

Ses I do know what you mean about playing with your little boy when you feel so tired and in pain. I look after my granddaughter who is 4 and sometimes I can't chase after her when she asks me to. Her favourite game is pairs so not much running around for that one. Like you I think if you are having a bad day and they say or do something funny it just lifts your mood and makes you feel a little better.

I can be feeling down and fed up before she comes. Then when she arrives I seem to lift out of the mood and brighten up.

It is always difficult to get the thyroid level with thyroxine exactly right. Even more with this fibro business. Difficult enough without it.

Hope you both not too bad today and we get the sun back soon.

Best wishes

Jane Amy :lol:

I am in so much pain in my back today infact it is from the waste up :oops: shoulders, arms and all the way up my back :oops: I do wish the good weather comes back as it is so dull today and coldish no good for our condition!!!! I am going to my sisters wedding on Saturday and I am so wondering how I am going to be? The other point is all the cost, as I have no money due to giving up work and then there is all the travel costs (taxi-ing) I have spent around £300 on new outfits for us all , I am just hoping the day goes smoothly?? :oops:

Anyway I do hope you both are having a better day? :redwine: :surfer: :cheerup:

Take care xxx