Anyone else with Fibromyalgia or Hyper-Mobility Syndrome?

7 messages
19/02/2012 at 16:50

Question in the title.  I have Fibromyalgia and Hyper-Mobility Syndrome (formally diagnosed last year, but probably had both all my life), but still run.  I quite often think that it would be easier to just sit on the sofa all day, but so many of my interests are outdoors and active, and I think it is very important to keep fit and flexible.

 How do others cope with constant pain, fatigue ... ?

 Ali x

19/02/2012 at 18:02

Welcome to the forum Ali.

I am hypermobile but that never stopped me from training (cycling, swimming and running.)  Having a good physio came in handy but doing core work and stretches, making sure I kept my technique as right as possible and keeping on training all helped. My joints are definitely happier when they are moving.

I don't have fibro but I've had a truly shite nine months of neuro issues and on top of that have recently been told I'm leaking brain juice. The leak can't be found so until it is found I need to manage on a day to day basis. Splendid. As I've only just had the dx, I've only just started the meds that allow me to function to some degree but I'm determined to get and stay moving again.

The current plan includes:


- Doing what I can. If that's only a 10 minute fast walk at the moment, so be it but that's 10 minutes more than I could have done last week
- Staying as positive as possible thinking about what I can do as opposed to what I can't.
- Continuing to try and keep a sense of humour even when I don't feel it.
- Eating naturally also helps.
- Super supportive friends keep everything in perspective.
- Never ever taking for granted how well I still am
- Remember even when I was properly well, there were days I didn't want to exercise for whatever reason. Some days I needed to just get out there and do it and the same will apply. Other days I knew I needed to rest and the same will still apply.
- Taking each day as it comes. I don't know if six months down the track I'll be back on my bike doing decent mileage or managing as I am now, or worse (hopefully not) but I can only take each day as it comes.
- Looking for other outdoor activities apart from just running etc so at least I can get a fresh air dose
- Keeping my goals realistic. I know there's no point looking to far ahead and trying to plan for a race as it's too early for me but I can try and plan to build up my fitness again. If things do stablise, then having a realistic goal may help.
- CBT will probably help as well
- Not thinking too much

My brain juice leaking syndrome is pretty rare and I hope I can show others that have this the benefits of exercise.

Edited: 19/02/2012 at 20:04
20/02/2012 at 07:50

You think the same as me.  Big hug and hope you get your brain sorted soon (I say that to myself every day!).

I only recently started running again (stopped back in 2005 after a false diagnosis of osteoarthritis and an incorrect treatment plan, which included no more running - had tried a few times since, but it was always too painful).  I have always walked (I have dogs) and looked after my ponies (even when I cannot ride much), so generally much more active than most people around me.

I try to run 3 times per week, but there are days when I am not strong enough (or life/weather gets in the way).  I love running and always looking forward to the next one.

Just thinking this morning that my pain/stiffness levels are the same after my longer run yesterday, so better to be fitter and stronger, and to be different to most Fibro sufferers I know (who moan that they can't do anything, but are overweight/smoke and NEVER exercise).

On the days (or just hours) when I am feeling relatively well, then I am just grateful for that.  There is always something to be positive about.

I hope this thread will help those with no health issues to realise how precious that is, and to cherish every day.

 Ali x

20/02/2012 at 09:55
Another hyperflexible person here, I generally only run 3 days a week to allow for recovery, sometimes 4 if I am feeling good! I do core strengthening and stretching every day, If I am running over around 12-13 miles I use knee taping and i have to wear orthotics! I always have something that is aching/ inflamed, it's frustrating but I do seem to be generally getting better and less injured!
20/02/2012 at 10:13
Cycling and swimming both proved to be good forms of cross training for me and my Hypermobile joints.


I can't quote on my tablet but that's a great observation about not feeling worse for having exercised too.
20/02/2012 at 11:22

Another hyper mobile person here...all my joints are superbendy and wibbly but the bit that suffers most is my spine, esp the sacral joint at the base of my spine. Running helps it no end, to the point I barely need painkillers or muscle relaxants anymore.

08/01/2014 at 12:56

well, am just getting to grips with this whole hyper mobility thing. I just thought that I was really flexible! that was until this year when I was having some serious problems with my knees.  I don't have the issues to the same extent as some here, but echo everything that has been said before.

doc tells me that we need to deal with this by building strength, and not to stop. core strengthening is key.

so, my plan is keeping running (shorter distances- boo!) and swimming (going to go for my first triathlon this year - yey!) changing my running style, supports, and (lots of) sports massage and foam roller to relax my muscles that have just switched off!

it is interesting to hear from more people, and I am glad that we can still run. I have to say, that was my biggest fear.


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