Has anyone else got awful fatigue with hypermobility?

[Wobblyheart]

I have been just diagnosed with hypermobility. I have to say I am a bit sceptical of the diagnosis as it perhaps there but it's not very pronounced. Nothing like what I see if I google. I do have a lot of triats that are consistent with it though but I would generally class it as mild to moderate.

Now I have felt very normal with it until i gave birth. Ever since the end of pregnancy- so over 20 months now I have been feeling really unwell. So many tests done... and one big one upcoming soon but I was just curious if anyone else with the condition experiences the following:

-feeling heavy - like my whole body is being pressed on and I have extra gravity pulling me down as if I am made of led

• breathlessness

• fatigue and exhaustion

• muscles tiring easily

Consultant thought it was all explained my hypermobility but I am not convinced. Why I felt normal before pregnancy and just a wreck since? (I am not talking about normal new mum tiredness it goes beyond that).

Have you had B12 levels checked recently? Low B12 can cause lots of symptoms, including those you mention (especially the fatigue / heavy body feeling). Did you have gas and air when you gave birth? (It is nitrous oxide and depletes your body of B12). Even if blood tests come back low normal, you can still get symptoms. Definitely worth checking. I had very low B12 levels around 15 months after having my 2nd child (found in a blood test) - GP gave me a B12 injection, and within half an hour I felt quite different, hadn’t realised how awful I had been feeling. It is worth getting tested (rather than just paying for private injections), as there may be an underlying problem with B12, which will be impossible to establish lush if you have a B12 injection, or supplements, first.

Yes all of that plus everything else under the sun has been checked :( (what you can check with a blood test, so things like vitamins, hormones, thyroid, muscle stuff, bowel stuff, organ performance etc etc)

Did they check for autoimmune issues in your bloods? An ANA blood test?

ME/CFS is very common with hypermobility - have you considered that? The hallmark symptom is Post Exertional Malaise, ie tiredness kicking in typically 24-48 hours after exertion, where exertion can be physical, mental or emotional.

Yeah, twice, all normal, they did several autoimmunity tests too.

I guess I am just terrified it's a cancer we are missing. I had a scare last year and now some alarming symptoms again and will be going for investigations in a couple of weeks.

But yes... everything else was ruled out including neurological causes like MG, MND, MS.

This was my GPs guess actually. But then rheumatologist was like - it's hypermobility. I asked the consultant could it still be CFS and the response frazzled me. He said: " I don't know I am not a CFS specialist" 🤔

Out of interest, was your b12 in the lower reaches of normal? Elsewhere (not in uk) they tend to consider figures in the low end of normal (in uk terms) as being deficient, and will treat it. Alternatively, there is ‘functional b12 deficiency’, where serum levels appear normal, but the b12 isn’t be adequately accessed at cellular level. In that case, you need Methylmalonic acid levels tested, in addition to another metabolite - and I can’t remember what it is called!! (Brain fog, sorry)

Also I had some of post exertion malaise before in my life yes but not super consistent. It had to be really severe to affect me but I can think of several textbook examples in my life. But not many to make me think it's definitely CFS.

At the moment since the end of pregnancy I have just been exhausted non stop, even when I rest (although max rest I had is half a day). And I do a lot now compared to how I was pre baby.

Hypermobility and chronic fatigue go hand in hand often. Could also be low BP or pots? You mentioned a high heart rate , that can be your bodies way of compensating for low BP

I have this and it turns out I have hypermobile EDS. May be worth looking into

Normal normal. And I also checked the active stuff through a private blood test, all normal. Vit D is borderline, so is calcium though

Yes I have ehlers Danlos syndrome as does Dd. Dd has autoimmune stuff as well which seems to go hand in hand with EDS for a lot of people, so she has fibromyalgia, and POTS and coeliac disease. She’s also currently being investigated for lupus and/or a clotting disorder.

your hypermobility could be EDS. The EDS groups talk about having “spoons” and how you only have so many spoons per day and you need to ration them. When you run out of spoons you will be exhausted. So tiredness is a big feature. No idea why.

I don't think I did but yes I have high heart rate often. Unsure about pots. Don't think its pots tbh. But CFS maybe.

I am going to have to wait till my investigations are done and if all clear then I will probably venture out to London for a specialist in hyoermobility who has knowledge of cfs too

Do you mind if I ask how you got a definitive diagnosis of this? (What tests, what type of consultant) - I have lots going on symptom -wise too ( and hyper mobile symptoms in me and my family, but have been going round in circles with the medical profession…)

Dd was diagnosed by a rheumatologist a few years ago. High score on the Beighton test.

i was diagnosed last year by my GP. There is a gp toolkit for it now and they’re not supposed to refer to a rheumatologist unless they’re unsure what type of EDS it was. I also have a high beighton score.

I am hyper-mobile and can’t say I relate. It doesn’t cause me any issues apart from I seem to like dislocating my knee-caps.

I was referred to rheumatology and was seen in our hospital by a rheumatology consultant. He seemed adamant i have hypermobility (did not say any type so I assume not EDS). Gave me a booklet about hypermobility. And sent me off to specialist PT.

I can see some things that line up (beside minor bendiness). I think my bendinrss isn't even moderate but mild (I have friends with way bendier joints and they feel well and don't have my other symptoms). Things that line up:

• less responsive to local anaesthetic than average
• quick labour (35 mins overall, 15 mins active stage)
• fertility issues
• scoliosis and always found hard to keep back straight since childhood
• bendier than average in certain joints
• some joint and muscle pains

Sorry you weren't askinf me lol. But I will finish anyway ha, my consultant just turned me.in various positions and did a physical exam. That's it

Thank you, that was my thinking too tbh. I haven't really had issues that I listed till recently. So i don't think hypermobility explains it