Hi! I'm new here and was looking for some advice and answers! All reply's are gratefully received!

Hello there! I was diagnosed very recently with EDS after asking my doctor to be referred to a rheumatologist. She also told me I had quiet severe fibromyalgia, something I'd never heard of before. After doing some research and reading the pamphlets she gave to me, I had a few questions which I think can only be answered by real people who actually live with this problem.

I was wondering if anyone had actually found a significant difference in their condition by keeping fit and exercising regularly?

I was also wondering if anyone with pre-existing anxiety found it helpful to start tackling that first, hoping the rest will fall into place :S

And finally, has anyone gone to/found it helpful to utilise those group sessions the NHS do on cognitive behavioral therapy and stress?

Thanks in advance :)

P.s. as you can tell I know very little hehe

16 Replies

  • Hi

    I was at Annual Fibro Conference last weekend and EDS & Fibromyalgia are bed fellows and also anxiety are common too. I have both too. One of the speakers was also speaking about 70% of FM sufferers could have Positional Cerical Spine Compression but bad news is that the MRI that we need isnt available at the moment but Dr Andrew Holman is hoping to show one the specialist hospital in London.


  • How interesting! When she was explaining it to me I had light bulbs going off in my head all over the place!

    I have a kyphosis of the thoratic spine which causes pressure in my luber spine, I can see how it would all be linked!

  • Hi Emmy welcome to our caring, sharing, loving, laughter fibro club, it's a brilliant site you couldn't have picked a better one so welcome, everyone is wonderful and helpful on here, anxiety goes with fibro, once they start you on the meds they will help the anxiety if they done tell your GP and he my later them, they do say exercise daily but not too long or to drastic just gentle, they Los say keep away from tomatoes any other nightshade vegetable or fruit, but again I think that is trial and error, tomatoes affect me but they may not affect you.....I have fibro in all four quadrants, I think you will find that nearly everone on here has chronic fibro p,us other conditions too, ie arthritis ect....we have a laugh as well as being seriouse, we are a loony lot, so feel free to join in with us if you feel like it .....sending you gentle hugs. And a welcoming handful of sunshine....Dee x. :)

  • Speak for yourself Dee im not loony, yet just a bit nuts :P

  • I take particular pride my loony-ness!

  • Is it a casethe case of, you don't have to be, but it certainly helps :) if so I'm a dedicated but:p

  • Hello Emmyj Welcome to the site. Firstly to answer your question about exercise, as in every thing fibro some it helps and some it makes the symptoms worse. Drugs exercise and everything else has to be tailored to you through trial and error I`m afraid and it can take time.I think though i am not sure but anxiety will be part of the treatment not separate to it.

    I have not had CBT myself but know that a lot of people find it helpful

    Have you been onto our mother site yet, on there you will find a lot of helpful infomation. To get onto it just go to the top of the page and click on the yellow butterfly.

    We are a friendly lot on this site who believe that having a laugh is good therapy. So a lot of sillyness does take place and please join in any time you like. We can be serious when need be and our main aim is to support and aid each other. I`ll leave you to have a look around and see you later hugs sue

  • Thanks everyone! I'm going to like it here :)

    Thanks so much for your information! I'll definitely check out the mother site!

    I feel better already knowing you guys are just a tap of the keyboard away!

  • Hello & welcome EmmyJ, This is a great place to be with, sorry to hear you also have this dreaded Fibro but we all try to make the best of it & help one another where we can, hope you are not in too much pain, I'm having another sleepless night that's why I'm here so early in the morning.

    Gentle Huggs Jay

  • Hi EmmyJ

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and I genuinely hope that you find it as useful as I do?

    Personally speaking, I had an accident late last year and so far been unable to undertake any physiotherapy or exercise as a result. I am a big believer in talking therapies, as I use to run a Counselling Centre many years ago, and I have seen many clients benefit from some sort of counselling over the years.

    I have pasted you a link to our parent site, and it is full of useful information on Fibro:


    I genuinely hope that you can find some resolution and relief to your issues and find the answers that you are looking for.

    All my hopes and dreams for you

    Ken x

  • Thank you so much everyone for the advice and warm welcomes!

  • Hi Emmy,

    Welcome. What a lovely spotty horse you have! What is your poison? Spotty looks like a SJ pony to me? Do you still manage to ride with all of your conditions? I had to send my horse out on loan last year as my dislocating hips and Fibro got too bad to ride anymore. I really hope you manage to keep going - you still have youth on your side :) xxxx

  • Hiya!

    Thank you very much! My pride and joy!! He is a showjumping warmblood, absolute angel! I never knew I had fibro but I did have problems with dislocating hips and knees.. he was such a kind horse, I remember once having done both my knee's in, told I had to have bed rest for a week, three days later I'm back on board, getting hoisted onto his back like I was made of porcelain, couldn't of asked for a better creature to look after me :)

    When I left for uni in September he went out on loan and is now recovering from major major surgery, hope to have him home eventually though!

  • Hi Emmy,

    Welcome to our site, it is full of wonderful people who will all understand and be able to offer both friendship and their own personal knowledge of Fibro!

    I see you have had quite a good response to your queries and you have also been invited to look at our mother site.

    You can also just click on the butterfly that will open some great info. On your left we have varying categories do take a look if you have time .

    As I was beaten to writing a full welcome I shall just say please do join are fun /silly/ laughter filled sessions, we strongly believe in laughter helps us feel so much better lightens the load and takes our minds of our problems :)

    All the best


  • You may find that regular exercise helps you with your stress as it will help you forget everything else and raise your serotonin levels, aqua aerobics has been mentioned as I looked up your condition on the web. You will feel good and sleep better after exercise too. Cardio exercises definitely help but only low impact in your case, but for your anxiety try Yoga Classes or Pilates, very calming. Mixture of both will help you greatly, I am sure. Plus mixing with other people and making new friends will be a great boost to your well being.

  • Definitely low impact exercise, anything that increases heart rate but without training for a marathon. We're all different and if you can still run, do it, of not , don't. Tai chi or other simple gentle moves - pilates and yoga are great- may help or anything non weight bearing like cycling or swimming. I'm afraid equestrianism doesn't fall into that category but as you already do it, don't stop unless you have to. In a lot of ways your own body is its best doctor and you know it better than anyone else. I think anxiety may be tackled at the same time. Stress aggravates pretty well any condition as it damages the immune system and needs stomping on.

    I didn't really find counselling helpful but it's horses for courses - pardon the pun on you lovely friend.

    There's nearly always someone awake and Ken likes cake and bourbons though he's not allowed them. He's also a vampire on a tri walker - what a combination.

    You'll fit in fine. There's a saying you don't have to mad to work here - well actually you do :P

You may also like...