sorry need to vent

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sorry need to vent

Postby galio » Fri Jan 27, 2017 5:16 pm

just need to vent, so angry the now, have just had a conversation with a doctor (from my employers occupational health provider) on the phone about my application for early retirement due to ill health as I have been off more than at work over the last few years, Im dx with hypermobility syndrome and fibromyalgia, anything I said about HMS he dismissed and said no its due to fibro! he said all HMS does is cause a higher probability of joint injury due to sun of total dislocation and falls! nothing to do with my IBS, Reflux, joint pain, tiredness or problems sleeping! I even stated that all info I have read has come from HMSA web site and that its are accredited, but no its all irrelevant apart from what he sees as fibro problems . he said pacing is all wrong and what he described as pacing is what they suggest to begin with to find your levels ie keep going till your tired, and the pacing i do as suggested from everywhere i have read about it is a graded exercise programme! I really need them to see that a lot of the problems are from HMS as that definitely wont go away over the next 10 years but he says fibro could (yip I know it could but probably wont) so without that support I probably wont get my pension! Im fed up of fighting you would think the fact i managed to jump through hoops and actually get PIP for mobility would show that I have real problems! I know fibro is a pain (literally) but all these "professionals" recon it doesn't get worse and will get better with the right exercise programme medication and a bit of CBT thrown in there too. therefore any application for retirement due to ill health is not likely to go through with fibro as the main culprit. arghghghghgh
sorry for the rant lol hope everyone is haveing as good a day as they can xx
galio
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Re: sorry need to vent

Postby Gaia » Fri Jan 27, 2017 6:11 pm

I do sympathise, but I also get where he is coming from with regards to HMS. One of my nephew's has HMS and ever since he was a toddler, he has had to do daily strengthening exercise, to help stop his joints failing. HMS does make joints lose strength very quickly, so I expect that is why he tells you to keep going with it.

It does not have to be heavy or hard physical pain-causing exercise, but as someone with fibro, degenerative spine and Multiple Sclerosis and several other health problems, I do find gentle swimming helps strengthen my joints and muscles, as does my nephew. He is in his 20's now and leads a fairly normal life, but if he stops exercising for more than a few days, he does get extreme pain and his joints go weak very quickly!

It may cause a little pain to exercise, but believe me it IS worth doing and it DOES help fatigue levels for fibro. My consultant told me the worst thing you can do with fibro is sit around wallowing in the pain. It's a self defeating exercise and he is right. Even if I lay on the couch for an afternoon, it will make me far more sore than it does when I move around. As much as we may not like to be told, our consultants DO know what they are talking about and it is up to us to adapt our lifestyle to get the best from our lives as possible - even if that means it hurts sometimes. Otherwise, we might as well just lay down and die, as to spend the rest of our lives sitting around watching daytime tv and feeling sorry for ourselves :nono:
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Re: sorry need to vent

Postby galio » Fri Jan 27, 2017 9:20 pm

i certainly don't give in to it, and know how easy it is to lose muscle tone, unfortunately he couldn't see that some things are hms related though and that they dont get better no matter what, such as the adrenalin rushes that cause me to be unable to sleep or cause me to keep getting up and doing stuff even though im tired and know i need to rest, the urge to move just wont settle, the loose joints when my hormones are rampant no matter how much exercise i do, the ibs that has no rhyme or reason all things i have had as long as i can remember and long before fibro raised its ugly head. he was so bloody condescending more or less phoo phooing anything i said that didnt fit with what he thought. and to top it the worry of what was going to be said etc had me so wound up before he phoned i have been in pain all bloody day. I do anything i can to try and keep what i have going, working wasnt working out, after a few weeks i become so tired that i cant function and i have to have a day in bed this gets worse and worse till i just physically can no longer keep going and i have to take time off and try and restart building stamina and my pacing again from scratch having over done it, pacing and work are not compatible for me, i keep going until i drop and meanwhile my poor husband is out the house 14 hours and has to come home and cook cos its beyond me as i have used all my spoons at work! I try to keep things ticking over and now im not working i can actually do more of my exercises to keep everything in beter condition but even that has to be watched carefully, i wiped my self out on tuesday as i stepped up to another repeat on the exercises up to what i was supposed to be doing from the start, but had been advised to listen to my body and to work up to three reps of 30 seconds over how ever long i thought it necessary, well 3 weeks in and adding in that last rep wiped me out for 3 hours and the pain was jsut starting to subside last night. i have a job i love and is on paper and has been uptil now perfect i can get up and move if need be sit if need be but its just getting harder and harder to sustain my activity levels and pain levels and trying to walk round a playground when you can feel hips knees and ankles slipping partially out of joint is not easy or pleasant and there is nothing i can do to stop them because its my hormones causing the connective tissues to stretch even more than they usually do!
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Re: sorry need to vent

Postby SchroedingersCat » Sat Jan 28, 2017 12:31 pm

I'm bloody sceptical of the claim that FM could go away. I've had it at least since 2009, can trace it back to a PVFS in 2004-5, and I'm active, positive, slim, fit, don't use medication, and don't do pacing etc, I've alos recovered from the fatigue by cutting refined sugar out of my diet, AND I'M STILL GETTING WORSE in every other area of the illness. Pain levels up, eyesight, memory, fine motor control - all worse.

I'm coming to the conclusion that what a lot of doctors diagnose as FM that then goes away after a few years, is actually something else altogether.
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