Hypermobility and a CFS diagnosis

[mrstigs]

Hello everyone. I don't know if anyone can help me with this but thought I'd give it a bash just in case anyone else has a similar experience.
I have hypermobility, was diagnosed as a teen due to pain in knees. I was quite high on the scale back then and believe I still am, although I never properly dislocate anything. My knees often pop out a little when walk but I put them in quite easily and can then continue with my day. They do ache quite a lot though, especially at the end of the day.
Then for the last two years I have suffered with fatigue, again not enough to stop me doing much, but enough to make every day a fight. I had an underactive thyroid but was put on low dose thyroxin and my levels are now normal, this didn't change the symptoms. I often have to force myself to keep going but I manage. My muscles feel weak and my arms and legs are usually heavy and sort of numb by the end of the day. My head feels fuzzy and my eyesight will blur and I will struggle to think straight. That combined with the stiff sore joints mean I spend most nights in mild but constant pain.
I have been told I have CFS and am now referred to the chronic fatigue clinic.
I guess my wondering is if it is likely that these are two unrelated conditions or is what is now diagnosed as CFS actually part of the hypermobility problem. Has anyone else both of those conditions? If it is the hypermobility will 'treating'the pain and fatigue as CFS make no difference or should I be asking for more focus on the joint issue first? I just want to feel better again so I can feel like I'm living life rather than just surviving it but I can't get a handle on what it is I need fixing.

It seems unlikely to be two unrelated problems.

ME guidelines, hypermobility is listed as a symptom

There's a poster who knows a bit about EDS, have a look here

From last year's ME conference
"It’s well known, said Bansal, that certain predisposing factors are associated with CFS, and people with these kinds of immune and autoimmune conditions (such as EDS) have a very high incidence of CFS, and even if they don’t have CFS, they too have chronic fatigue."

I have heard of someone with ME diagnosis being rediagnosed with EDS.

Hi, no advice but I'm in a similar boat - HMS and fatigue, though not diagnosed with CFS. Finding it difficult to get doctors to do anything. I see a physio regularly now though. Mine comes in bouts/flare ups. Think it's common for them to be together - my physio says it's because all your muscles have to work so hard if you have HMS that it tires your body out.

has the gp tested your vit d levels?

I'm literally just discovering about this and I think I've read hypermobolity can be prone. I'm hypothy too and went to the Dr convinced it was my thyroid - terrible fatigue, aches and pains. I asked for that and vit d test - thyroid is great but I'm very vit d deficient. after lots of reading it seems a) most of us are deficient as we all avoid the sun and are at a certain latitude and b)an awful lot of vague illness and fatigue could simply be that.

(I'm now banging on about it to all and sundry!)

Me too !
I mean the vit D thing. HMS, horrific tiredness and weakness and vit D deficient. Much better since on tablets

also look at POTS which very often goes hand in hadn with EDS and is misdiagnosed as CFS/ME

"I had an underactive thyroid but was put on low dose thyroxin and my levels are now normal, this didn't change the symptoms."

I think you might have answered your own question there. Thyroxine will not relieve your symptoms unless you take enough of it and you can work out roughly what your replacement dose should be by taking it as 1.6mcg per kilo of body weight.

it is highly likely that your GP doesn't know how to dose you properly to make you, and keep you, well.

Also thyroxine won't work efficiently unless you take it properly (on an empty stomach, with water and at least 30 mins before eating) and your vits and mins are optimal.

You need to know your TSH and FT4 results and reference ranges and FT3 if you were lucky enough to get it tested. You need to know if you have auto immune thyroid disease. You also need to have B12, folate, vitamin D and ferritin tested and to raise all of those into the optimal range (B12 over 500, ferritin over 70, vitamin D over 100).

It's a pain having to do all this, but it's very important and it should pay dividends in the way you feel.

low dose thyroxine is the answer to your question

when your tsh is back below 1, your t4 high in range, and all vit deficiencies sorted, then if you still feel unwell, try the cf clinic. until then, sounds like underactive thyroid, as RockinD says

ditto wot they said ^^

sorry op to hyjack thread... (rockin according to my calculations according to your equation I should be on 85 thyroxine. I'm on 150 . I'm about 53 kg. I'm seeing Dr next week regarding a range of tests but could this be right? or could it possibly be I am not absorbing properly? ie coeliac? I had to be on 200 in pregnancy and a consultant at at talk said I may want to get it checked its just I don't get any typically coeliacs symptoms. or is your equation a starting dose?)

www.medscape.com/viewarticle/713972

sorry, read this and indicates I probably should be on more.

littleowl I did say 'roughly'. On that calculation I should be on just over 100 and I'm actually on 125.

I wouldn't worry about it. Do you feel well on 150?

no, but tsh has been 0.85 - however I think I've got severe vit d deficiency. I used to be on 125/ 150, dropped to 125 but around Oct insisted I felt rubbish and better at 150 despite tsh 1. I'm guessing I'll feel better at 125 when vit d is sorted out and my body's recovered a bit.

(sorry op!)

of course it was me who has gone to gp to ask for vit d test. not had full results yet.

I have hypermobility syndrome. The way I'm understanding it it this: our body does not make collagen properly. Collagen is in our muscles, blood vessels, joints etc. because of this our blood does not circulate properly, this is because of the poor state of our blood vessels, and the surrounding muscles that help to pump around the blood. I haven't looked into it, but I'm not aware of any treatment that improves our collage However there are self help things we can do - we basically have to live a much healthier life than others without hypermobility. We need to eat more healthily as our blood is pumped so poorly nutrients don't get around our body's, so we need to ensure we have many more nutrients than the normal person, no alcohol or caffeine as these affect blood circulation. Lots of exercise to build up our muscles, but nothing too intense on any one day. Keep late nights to a minimum, get plenty of rest and relaxation, ditch the workaholic lifestyle. Spend more time in the sun - it is more beneficial than the vitamin d tablets.

I'd love to know if there is anything we can do to improve our collagen. Is any research being done? I have started making soup from chicken bones as I've heard that helps your connective tissue, but I don't know if that helps a hypermobile person as it is in our genes not to make collagen properly?

Hello people, thanks so much for the responses.
I have wondered before about the thyroid, in fact I posted about it a while ago and got some very helpful responses. I'm only on 75 a day, but doctors won't increase it. Nor will they give me the results other than to say my levels are 'just about in normal range now'. I don't know how to tackle this without sounding like im just on the hunt for higher medicine or one of those bossy people that tells the doctor their job, so I'm kind of stuck. They are also reluctant to look into the hypermobility really as the doctor says 'that's just double jointedness and doesn't cause any other symptoms'. I don't really have time to talk about it and it's all kind of rushed and brushed off so I walk out just feeling like a bother tbh. I'll check out the calculation later as I only know my weight in old money, it's quite possibly not enough by those limits though as I've become a big lass since this all began (nearly 14st and rising no matter what )
The doctor doesn't seem to need to see me again and not sure if I have the balls to make another appointment and press her about it so should I just tell the people at the fatigue clinic about my concerns? Will they be able to pass me to other people? In fact, who would I even need to see?

Gah, you have to be mentally at your best to work out what's wrong with you, if only I could stop feeling rubbish long enough to work out why I feel rubbish life would be much simpler.

75mcg is not actually even a starting dose, so you may well be under-medicated and it is entirely possible that your GP is actually keeping you ill. Just about in the normal range is not good enough - sorry.

Under the terms of the Data Protection Act, your test results are your data and you are entitled to a copy with the figures and the reference ranges. Ask your GP surgery for a copy of your test results for, say, the last two years, you don't have to give a reason why you want them, just say you know you are entitled to them.

They should give them to you, either free or for a nominal charge. if they won't, complain to your local CCG (successor to the PCT)

Come back and post them and merci and I will have a look at them for you.

if you are 'just in the normal range' then this is prob around 4 or 5 tsh

personally i only needed an increase to 100 to get my tsh to under 1, so it might not take a big increase

it completely changed my tiredness levels

up to you - your gp sounds uninformed. can you see another? change practice?

i just increased my meds myself as i dont take any shit and am happy to be 'the difficult patient' if it makes me well

you could try taking in a copy of a book called 'understanding thyroid disorders' to show your gp. it says in there that many people need a low tsh

xposted RockinD

Thank you for your help . I shall stop being wet and ring the doctor for my results today. I certainly should be more proactive, it's just hard to not just sit back and feel helpless when you feel so rough isn't it. What results do I need to look at, is it just my tsh level?

I rang and checked, the receptionist was very nice . I was last checked beginning of March and my tsh was 4.2, no t4 levels recorded so she thinks they didn't do that bit of the test? So 4.2 isn't mega bad is it, so maybe it's not the thyroid after all. Bummer, would have been nice to have a quick fix!

mrstigs, please believe us

your tsh is crap

it is causing your symptoms (well is most likely cause)

if you treat your hypothyroidism, you will most likely feel better

this is your choice. listen to your current gp and continue to feel crap. or get a gp who will treat your hypothyroidism and you will feel better

up to you

please buy this book

understanding thyroid disorders

and show your gp page 88. 'raise t4 to high range of normal and reduce tsh to lower part of normal' ie tsh of 0.2

it is part of the bma range of books written by a uk specialist. it is a book your gp should listen to

Ah. Then I shall go back. Again. (They will be pig sick of my face ) Do you know where a good place to look for well respected research on the subject to take for back up?
I might not want to pester but im not sitting by feeling awful with a me diagnosis if I could make it better with a little white tablet. I may will still have the joint pain but anything that even slightly helps the awful muscle weakness and tiredness can only be a good thing. Its a fight to even hold my phone up to type today. Thanks for taking the time to help me. X

X post. Thanks, I'll look it up now.

we have been there! tbh i would ask for another blood test to check
ferritin
vit d
b12
at the same time. usually someone hypothyroid will be low in at least one of those too. my gp tests mine every year