My First Post

Hi everyone. I've had over 20 years of stiffness and pain and have seen all sorts of consultants, no-one having the slightest clue. Yesterday was the final straw when I was told by a neurologist that he couldn't help me. He took my breath away when he said 'Well, it could be Fibromyalgia, but I don't really believe that's a thing'

So, that's it, I've totally lost confidence in the medical profession and have joined today hoping to find some self-help information and encouragement. I refuse to let this bring me down and I won't accept this is the end of the road.

Can anyone suggest where I should start? Exercise? Diet? Is there a good book? Thanks.

6 Replies

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  • Hi and welcome to the site! I would start with a different doctor. You need one that has some knowledge about fibro. One who you can talk to and will listen. On mother site there is a information packet that you can request. Personally I use a Ems unit it's kinda like a tens unit. I do stretches and gentle exercise. I watch my diet ( diabetic so diabetic diet). I have had physical therapy. I also have learned my limits. What I can and can't do before I pay a price. I do things every once in a while I shouldn't but it's worth the price. I would say education is the key. Good luck

  • Hi there

    Welcome to the forum :)

    You haven't said whether or not you have seen a Rheumatologist? If not, that might be a good start to see if you can get a definitive diagnosis.

    The big problem with Fibro (I have had it for over 30 years) is that what works for one person does absolutely nothing to help the other.

    It is a huge matter of trial and error unfortunately.

    You will get lots of hints and tips here, but at the end of the day you need to find out what works for you.

    Keeping a food diary and or pain diary can be extremely useful.

    There is lots of information on fibroactionuk.co.uk (Sorry Fibro fog interferring - I think I've written that correctly! It's our mother site and there is a wealth of information there.

    Also post away on any questions you may have at all. We are a helpful kind bunch who all look out for each other.

    You may find that you get more responses if you lock your posts to this community which means that all the information on your post stays securely within the forum and cannot be seen on the general internet.

    However, this is completely your choice and I am not saying you have to lock your posts. It is up to you.

    If you want to lock your posts, when you have written your post at the bottom underneath the blue box you will see that you can choose between o everyone and

    o community. If you click on community circle a padlock will appear at the end of the title on your post so others will know the post is locked too.

    I hope that made some sense!! In much pain today and trying to distract myself.

    xxx

  • The others have given you some excellent information. A book I borrowed from the library I quite liked was Fibromyalgia and Myofascial Pain Syndrome b Chris Jenner? I think it is a combination of meds, gentle exercise those in water as there is less pressure on the joints seems to be the best. Exercises given by a physio who understands fibro, acupuncture can be good for some people. Exercise I find that is little and often is much better than longer more intensive sessions and gentle stretching often helps.

    A diet which has as much fresh food in it as you can manage and is not full of preservatives and sugar.

    Have you had your vitamin D level tested as alot of people with fibro have low levels.

    Tens machines can also help some people. Good luck with it all.x

  • Hi Belinda, you have been given information by the others so all I would like to say is welcome to the forum. I have learnt a lot from the people on this forum, I hope you do to :)

  • Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you find the forum useful, informative and loads of fun! I have pasted you a link to our mother site, Fibromyalgia Action UK which hosts loads of useful Fibro information: fmauk.org/

    The other respondents have given you some wonderful advice so I will just genuinely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Thanks so much, everyone. I really mean that.

    I went to see a Rhumatologist as Regnofibro1 and PainfulPixie suggested. For the first time in my life I've met a doctor who understood exactly what I was going through. He confirmed I have Fibromyalgia and, after an MRI, said I need to have cervical disc replacement surgery. I actually sat in the his office and cried with relief, which was embarrassing, but finally somebody knows what's wrong and has a plan for me to follow.

    I've made notes on what everyone has suggested here and have already made a start. Rosewine, I had a blood test and I do have low Vitamin D levels. Thanks for that suggestion.

    I've started a gentle exercise programme and the fridge is full of healthy fruit and veg. I feel so much more optimistic and just happy and so grateful that I found this forum. Thanks again.

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