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Confused!

b19htr profile image
12 Replies

Hi, I was diagnosed with fibro almost 10yrs ago now I've tried various forms of exercise as recommended by my gp and rheumatologist but always end up the same, extremely fatigued etc after only a few attempts ie swimming (and not very much of it). My younger sister as been diagnosed with ME in the last 12months. I was always under the impression there were not too many differences but after just reading an article on the difference between ME and FM I am a little confused and I am now wondering which I actually have! It says ME patients are exercise intolerant but that is just how I feel I am and from reading posts on here others also feel the same way! Is this why it now seems harder for us diagnosed with FM to actually convince DWP how we actually feel??? According to the article I read with FM you can work and live a normal life!!!!!!! I know this is not true!! The article I have read this on is the hummingbirds foundation for ME!!

Sorry for the rant can anyone please help me!!

Thanks

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b19htr profile image
b19htr
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12 Replies
TheAuthor profile image
TheAuthor

Hi b19htr

I sincerely hope that you are feeling as well as you possibly can be today? I truly believe that we are all unique individuals and therefore we all respond and react differently to both our illnesses and our medication.

I also use this same analogy when it comes to physiotherapy, in that some sufferers may benefit from one type of exercise and another will not. They may need something either a little more gentle or more robust than another person? We can see this at work with many members on the forum, in that some say a particular medication works for them whereby another member says it did nothing for them?

As for proving our illnesses to the DWP, I think that it is does not matter what illness you have as the emphasis is on the claimant to prove that they have a disability and should be awarded benefits. I think this goes for any disability from MS, Cystic Fibrosis to Motor Neurons Disease, etc, etc?

I want to wish you all the best of luck and I genuinely hope that you find the answers that you are looking for?

All my hopes and dreams for you

Ken x

b19htr profile image
b19htr in reply to TheAuthor

Thank you I totally agree with what you say, I'm usually quite a positive person but the article I read really got to me. Must've been having a bad day.

Thanks again

Betty67 profile image
Betty67

I have been told at various times that I have ME and that I have fibro. They are very similar and some doctors especially I believe in Australia think they are the same condition but with different emphasis. ME more tiredness and Fibro more pain.

b19htr profile image
b19htr in reply to Betty67

That's just what I thought and I feel I do have a lot of both symptoms in fact my gp treated me as having ME until I got diagnosis off rheumatologist for fibro. The article I read though said they are completely different, basically it gave the impression fibro was nothing at all, of course we all know different to that! Lol.

Thanks again. X

Betty67 profile image
Betty67 in reply to b19htr

When you have the energy go and read Dr Sarah Myhill web site - a google search should find it or can send you a link. She explain things quite well.

You will not when reading the posts on this web site that although we all have fibro we are all different it is a complex set of symptoms.

"I have not failed. I've just found 10,000 ways that won't work. Thomas Edison "

b19htr profile image
b19htr in reply to Betty67

Thank you I will google that. Hopefully it will get me back to thinking positive, I'm finding things a bit difficult at min.

Thank you x

Betty67 profile image
Betty67 in reply to b19htr

Bound to be but that also is not helpful. be kind to yourself, learn to pace and accept help wherever it may come.

b19htr profile image
b19htr in reply to Betty67

Thank you for your support I will

As Ken has already said this illness hits all of us in different ways. some are able to work. others are not.

I worked for 25yrs not even knowing that the weird symptoms IBS, RSL ect was all part of the same illness. But when it finally hit hard there was no way that I could work

I find that some of these sites do not give a full picture of fibro and gives the impression that everyone can live a `normal ` life with the right treatment. If only.

These sites can be useful. but always keep an open mind, in my experience of them not all are factual and others will be over enthusiastic about new treatment s and discoveries,

Hugs sue xx

b19htr profile image
b19htr

Thankyou, I think I've read the wrong article at the wrong time when feeling low to start with. I worked for a few yrs unaware of why i felt so bad eventually I hit the wall and couldn't do anymore, that was 10yrs ago!!

Thanks again

Take care. X

mitziblue profile image
mitziblue

Sweetheart, you maybe able to work with Fibro in the beginning but after a few years of fighting it you soon realize your body has more limits on what you can do as time goes forward. I worked about 5 years before I knew what I had and it was horrible. I always thought what am I so exhausted all the time. I felt as though I was just getting lazy for some reason. My stomach IBS was my worse problem at the time. Then even before I was diagnosed I had to take disability and that was 11 years ago. Fatigue is a big part of Fibromyalgia. I don't know why unless the pain just wears you down. There isn't anything normal about life with Fibro, although if you could be seen at a pain clinic, it does help. The meds I take make the pain at least bearable. The fatigue still comes and goes, it's like Forrest Gump said Only It's Fibro is like a box of chocolates, you never know what you are going to get. As in you never know from day to day how you are going to feel. I hope this helps. If I can help out in anyway just let me know. Hang in there sweetheart!!! xxx Mitzi

b19htr profile image
b19htr

That is so true, I worked for a few years before diagnosis wondering why I felt so bad in the end I was ready for collapsing. You just wish other people could understand how you feel instead of telling you how well you look!!! The Forrest gump ref is so good! Sounds like you've had a rough time with it hope you're not too bad at min! Regarding pain clinic I am currently under physio for lower back pain and I am currently trialling a tens machine. Fingers crossed it works but not convinced lol. I didn't like how the article I read read, if you see what I mean it seemed to give the impression fibro was nothing but ME was so much worse. Also as I mentioned my sister has been diagnosed with ME and she worries me a lot because of the things she is doing or rather not doing, I live away but my parents, her children and partner seem to d everything for her which is great but I do feel they are going over the top. She has also bought a mobility scooter again this isn't necessarily a bad thing but do worry she is giving into it too easily! Even though it has been a struggle I have always done my best to try and do things for myself of course this has not always been the case as I'm sure you'll understand, I have always been very stubborn though lol.

Thank you so much for your advice xx

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