Hi there are there any fibro peeps who have hypermobility syndrome as well as fibro?

My pain consultant mentioned that this was a rare pairing for fibro so I'm curious to find someone else like me.

I would like to know how you cope and manage to balance the two together. I've struggled for years with various health problems whilst managing the pain that goes with it alongside the dislocations, strains and sprains. What meds do you take? can you manage exercise/physio? I'm currently having problems after hydrotherapy sessions with my joints slipping and sliding making it difficult to move about :( and I may have to stop the sessions. I hope this doesn't happen as its helping very much with my reconditioning!

I'm particularly frustrated about the fact there isn't much that they can do for me except manage and increase my current meds. I'm also very sad about the loss of my independence as I've recently lost a lot of mobility and need to use a wheelchair to get out anywhere and its kinda looking like its part of my future prospects to be stuck like this.

How can I plan anything? I don't know what I'll be like in 2 hours never mind 2 days... do you have problems with this? It's really really getting me down especially with all my friends having bbq's and summer get togethers and I end up saying "Yay, cool " and having to get in touch to say sorry! can't make it this time.

Do you think there's any hope of some kind of miracle medical intervention ever happening to help with the HMS?

Frustrated xxxzebxxx

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  • I do have one hip socket which allows me to over extend my femur it is the hip I broke 33years ago and surprisingly the most painful of the lot., Oh I only have two :) xgins

  • sounds painful! but can't help chuckling at the avatar :-)

    do you use this as a party trick? not the avatar hehe it would really freak peeps out after a few vodka tonics (rofl)... again not the avatar! never mind cheers for the reply can't type anymore spasms kicked in aaargh! xxxzebxxxx

  • Hi

    I have both and from what I was told they often go together, hms is often genetic and runs in families, as does fibro. My son has hms but not fibro thankfully. I am adopted so do not know who to blame lol. I have bendy joints especially lower spine, fingers and toes, neck, elbows, neck and hips. Fibro is bad enough but having hms as well makes it a double whammy. I have not got much to offer in the way of comfort but you are not alone.

  • Thankyou silverstar

    my rheumy and pain consultant said similar things regarding genetics. My mum was diagnosed with arthritis 25+yrs ago and is only now going to get to see a proper specialist, privately. I've been telling her for years that we prob have same thing but she's not as bad as me.

    I was heavily into sports from the age of six through to 18 and incurred many injures but never broke a bone. Then as an adult I've had many nasty falls due to ankles, knees giving way and again not broken any bones! Its always been nasty strains and sprains on muscles and tendons resulting in allsorts of problems now. Plus the gastro/digestive probs too, which my rheumy said were connected to the HMS.

    I mean everything is starting to make sense to me how and why my probs have occurred after 20 yrs of being told there's nothing wrong keep taking the pain pills. The pain doc was lovely and recognised instantly that I must have had the Fibro for a loooooooong time too, which came as a shock but again starting to make sense.

    Have you got restricted mobility too? I know that's prob a stupid Q to ask but the 'double whammy' as we call it kinda makes life awkward and frustrating. How do you cope with children too? It must be very difficult and exhausting. I only got up went to bathroom and back earlier and body decided to tell me off by going into spasms. I ended up having a snooze and then getting a bath and then the afternoon was pretty much gone. Its sooooooo annoying!

    As for comfort, you give me that by being like me so that now I know I'm not the only one.

    Thankyou very much for replying to my Q.

    xxxzebxxx

  • Hi

    Yes I have got restricted mobility, I have feet problems including heel spurs and plantar faciitis in my right, has it in my left and had 2 heel spurs removed surgically, I think I got that after years of doing step aerobics and hms doesn't help as I have had high instep. I also have trapped nerves in my right, these could be attempted but I will be in plaster for over 6 weeks and there is only a 30% success rate or so so I haven't bothered. My kids live at home but are in their late teens and early twenties so whilst I am still, head chef and bottle washer they don't need much in the way of looking after thankfully. My hubby is great and helps out a lot so it could be worse.

  • crikey! sounds nasty I'm not too familiar with the foot problems or correct terms, but I too have high arches, curled toes next to little toes on both feet with them being tiny compared to big toes and ones next to them which are long and spindly. I fall a lot because of it and my balance is dreadful too.

    Sorry, it sounds like a cryptic clue doesn't it!

    What's plantar faciitis?, I don't know about this but curious to find out.

    I don't have any children only small furry pets that my hubby and I call our kids LOL. I was breeding Russian Steppe Lemmings until end of last year when I decidied I couldn't cope with it anymore. There were 32 of them at one point LOL but I was head chef and chief bottle washer too. I only have a couple now and its so much easier to manage. My hubby does everything these days until I get some fitness back, hopefully ! I don't know what I'd do without him.

    Anyhoo! my lovely hubby just given me my tea. Its really good to know there's someone else and I appreciate yr replies.

    Regards xxxzebxxx

  • Hi

    It, is when the long tendon that runs along the whole foot from beneath the toes to the heel becomes inflamed and sore, this then pulls on the heel bone and extra bony growths or spurs grow.

    it can be managed with orthotics, pain killers and steroid injections but in severe cases the spurs have to be removed. It is really painful and during periods of rext the tendon becomes tight and shortened msking putting the whole foot flat on the floor almost impossible.

    I tried wearing a night splint that kept my foot at an angle at night to avoid those first agonising steps in the morning. But I found it impossible to sleep in it lol. Also known as policeman's heel as it is more common amongst people who walk a lot or spend a lot of time on their feet.

    Your lemmings sound adorable I only have one cat who is the spawn of the devil and causes me more trouble than all the other cats I have ever had put together.

  • I've just noticed that the epic response that should right here silverstar is no-where to be found!

    It's somewhere in the abyss of HU underworld I think.

    I can't remember what I wrote either so can only apologise.

    PS The lemmings are adorable!

    xxxzebxxx

  • I too have understood the the two things often go hand in hand, not sure why Zeb, but certainly it does ring bells in my somewhat befuddled head. Have you looked into the links online, I think u might find some interesting reading ! Good luck.

    Foggy x

  • Thankyou Foggy

    I'll take a look.

    xxxzebxxx

  • Yes I knew I had hyper mobility for a few years. Then got diagnosed with fibromyalgia in March, although I think I've had it for about 10 years.

  • yeah! similar thing to me. my pain consultant reckons I've had fibro for years too. weird isn't it. All that time, pain, consultant after consultant. oh! if only it were easier to diagnose fibro... I don't think I'd be half as bad as I am even if I'd got a diagnosis 3-4 years ago. The problem was not being able to get access to treatments because they didn't know what they were treating and thus did not want to cause me any damage. I don't know about you but I feel like the last 20yrs of my life have been ran by the NHS and the DWP! I;m seriously fed up of that now too, I don't have the fight or the energy anymore so I focus on being me.

    Sorry! I appear to have gone off on a tangent Mary.

    Thanks for replying

    xxxzebxxx

  • Yes me too I've been fighting the nhs for such a long time I've had more tests that have come back negative and I just feel and look like hypochondriac I was being tret for rheumatoid arthritis then when none of meds were working and I had already been told several times I was hyper mobile the rheumatologist eventually said you have fibromyalgia after 4years of mis diagnosis. My doctor kept saying well you are not showing a flare up. So yes I understand your rant. Excuse my rant too. Ha x

  • LOL

    rant excused

    xxxzebxxx

  • This is soo interesting as my 15 year old son has hypermobility but I suspect fb as well, i also suspect i might have hypermobility for various reasons. You mentioned foot pain and I get it a lot, I sometimes walk and it feels like cramp under both foot arches , but it can dissapear quickly as well!! which is hard for some people to understand why you are one minute in pain and then ok !!

  • Hi

    It is genetic in many cases, I have two sons and one is as stiff as a board lol and the other is really bendy like me, I did wonder if he might have Marfan syndrome but hopefully not. Being male is he is at less risk of fb as it affects women more than men. I really hope so, I wouldn't wish this on anyone.

  • I also forgot to say, when I asked my son's rheumatologist in Alder hay if it was hereditary or could he have fb she said no straight away!!!!!

  • Hi everyone

    I must say thankyou to you all for replying to my Q I never imagined to receive as many that I have. Its wonderful to know that I'm not alone anymore and there are new friends to share my hyper-fibro experiences with.

    Best wishes and Big gentle hugs

    xxxzebxxx

  • Hello I have both fibro and EDS3. I have been to Stanmore for help with managing both disabilities and they understand my needs. They are considered to be one of the best centres in the country for EDS3. They offer an intensive rehabilitation course up to 3 weeks long residential during the week with weekends going home.

    I find the fatigue and the dislocations frustrating. ive read somewhere that vitamin C can help build collagen so I take this when my constipation flares up as well. I also take magnesium citrate or malate to help with my pain symptoms.

    I am also a wheelchair user so can empathise with your situation.

  • Thank you sounds interesting :)

    Speaking of the collagen side of our health problems my skin has just flared up again really badly and am actually at the docs this afternoon to discuss it and whether to head back to my dermatology nurses :o Do you have skin problems too?

    I am having so many skin issues it's driving me nuts and the collagen problem I think is more than just down to my hypermobility syndrome and have looked into ED, lupus and shoguns because of the way it is flaring up from head to foot differing skin conditions all at the same time :( I always have problems with sinuses, eyes and my ears too!!

    I take extra vit c through fruits and juices because I am a smoker.......... naughty habit I am trying to kick because it is also not good for skin but it's proving hard :( interesting tip though I shall look it up :) I also have IBS (C) so am interested in anything to help prevent it :) I find jelly babies are good and liquorice if you like it and also dark chocolate :)

    Many regards to you and sending flueecy fluffie hugs to you to help fight the fibro :)

    xxx sian :)

  • Licorice tends to increase my heart rate so cant take it at night. However vitamin C and magnesium supplements (malate or citrate are the best forms) are great to relieving my constipation.

    I think I lack vitamin E in my diet so take supplements to help with my dry skin on my forehead.

    I'm off gluten and dairy for the IBC and the autism. Also avoid pineapple or bromelain because it can increase my collagen injuries.

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