Hi from another new member, newly diagnosed (at last!)

[PhoenixRising]

Hi,

I live in Yorkshire with my husband and 4 kids. I've had ongoing joint pain and fatigue for about 16 years since I had my eldest, worse the last 7 (since I got pregnant with my youngest). I've been back and forth from the doctors over that 7 years, having blood tests and being told nothing was wrong, and being offered antidepressants (no thanks).

I decided to have one last try and this time got a referral to a musculoskeletal triage service in my area, with a specialist GP. Well he was brilliant. Went through his standard questions, examined me, and told me I have HMS. He needed to do some more blood tests just to confirm that other things like arthritis can be excluded, so I am now waiting for my follow up appointment to come through and then I will be referred for physio. Told you something was wrong, GP!

I never suspected HMS in all the years I've been trying to work out what was wrong with me. I'm gluten intolerant and that flares everything since it trigger inflammation so that confused things and also fooled me into thinking maybe it was other food intolerances causing the symptoms, or something autoimmune since gluten can trigger that. I've never seen myself as "bendy" and wasn't good at gym as a child or anything like that, so excluded it automatically. But I score 5/9 on the test, though only just being able to do the 5 things I can do. I guess being extremely bendy like a gymnast is not necessarily what it is all about when it comes to how much troubke it gives you, as I am not so bendy but have a fair amount of pain, a lot of fatigue and quite a bit of joint trouble. I've had joint problems all my life even before the pains started, I just never realised it wasn't normal to feel like your hip popped out of joint when you sat down to play (aged 9) or not be able to swim breastroke legs properly as your hip hurt, or have a sore toe with a joint that clicks when you walk etc etc.

I also have other issues like GERD, IBS, severe stretchmarks, varicose veins and so on, which I understand could be part of the same thing.

I'm really hoping the physio is helpful although I know this is something I will be dealing with for life. I am so exhausted and sore all the time. My kids think it's funny when I stand up from the sofa and can't put weight on my right leg, but I don't! Plantar fasciitis, shoulder pain that stops me sleeping and meant I had to give up yoga, and so on. Bleurgh. I'm also very overweight, I've gained so much since my symptoms worsened, I think it is a combination of being inactive due to keeping injuring myself (ahve had the PF for over a year and before that had an ankle ligament injury and could hardly walk for 9 months), overreating to try to keep going when I am exhausted, and comfort eating because how else am I supposed to have fun in this state?! I really need to sort myself out.

Two of my children had already been diagnosed hypermobile several years ago (my husband is stiff as a board so I was baffled where that came from not realising it was me lol). My daughter is 15 and she had orthotics for a while as she has extremely flexible, flat feet, and she's also had problems with her jaw. My son has hypermobile joints in his legs and flat feet which make him look pretty funny in shorts and bare feet but he hasn't had any problems yet. I am concerned for them, but at least they will know what the problem is and hopefully get a lot better support than I have had all these years.

[nemonie]

Hiya,

Welcome to the boards. I too wasn't hugely bendy, although my elbows are extremely hypermobile, but as a child I was never sporty or anything. I'm glad you've found a medic who seems to know what they are talking about. Have a search around on the boards for the various topics that you've mentioned. Lots of us have orthotic insoles to help with our bendy feet - that is feet that have lovely high arches that go flat on weight bearing.

Nemonie

[PhoenixRising]

Thanks .

I have high arches which have become medium over time, and nasty foot pain. Three of my kids have feet flat as pancakes!

I've always been rubbsh at anything physical, the only thing I thought I was good at was giving birth, until I found out fast labours are actually just another symptom of something being wrong with me. I'm quite sad about that, probably sounds silly but it helped me feel better about myself that I was good at that one thing! I spotted through all my pregnancies too, I suspect that was also related as they said it might be little blood vessels on the cervix breaking.

[PhoenixRising]

Thanks .

I resigned my job this week. It was just a little part time one and we can manage without the money thankfully. I enjoyed the job itself but it took all my energy, I'd turn up and work and do what needed to be done, and then be exhausted the rest of the day and have nothing left for my kids or getting things done at home (so my husband ended up doing more and then he worked less and his hourly rate as a research consultant is a lot higher than mine as a lunchtime supervisor!).

I'd been wanting to do it for some time, but the diagnosis gave me permission I think. I have got into a vicious cycle of worsening health, increasing inactivity and weight gain and I need some space from relentless pressure to keep going to break out of it (I need help to get active without injuring myself, and I need to get to a place where eating chocolate isn't the only thing I can look forward to because I am so exhausted and sore). I hope I can do it, because if I don't get on top of things and keep gaining weight and getting weaker, I am going to end up in a really bad state.

I'm feeling a bit ticked off with my parents. All the aches and pains, joint problems, stomach problems etc that I had as a child, were never investigated and just labelled as me being a fusspot. I grew up believing I was an anxious, depressive, negative, wimpy whinger! There may be some truth in that but I was dealing with denuine problems! it was perpetuated by my husband putting a lot of pressure on my for not managing to do more and for complaining about tiredness and discomforts etc. Thankfully when I got worse 7 years ago he was finally convinced that I had genuine physical problems. Then there was the GPs telling me I had nothing wrong and offering antidepressants. It is strange after all these years to finally be vindicated in my belief I had a physical ailment, and also to have my self doubt wiped away. I'm severely gluten intolerant as well and was very poorly with that for years before I worked it out 4 years ago.

Hopefully from here on in I am on the up. I have 3 more weeks of work, and have my follow up appointment sometime soon and will then be starting physio and being able to take some care of myself instead of having to just force myself through the exhaustion. Fingers crossed! (as long as it's not a bad hand day!)

[littlekitty]

Hi and welcome.

I am waiting to get some diagnosis but have been told by a doctor that I probably have HMS.
All my symptoms point to it:
-aching joints,
-flat feet,
-double joints,
-fatigue,
-cracking/clicking joints.

Sometimes my joints just play up badly for no apparent reason, like the other day event knees just went when I was out having a slow stroll round a few shops.
I just want to know what's wrong.

LittleKitty

[PhoenixRising]

Sounds pretty likely to me.

I am still waiting for my follow up appointment, he said it would be 3 weeks and I'd get a letter. Four and a half weeks letter and not even a letter yet, just want to get on with it now.

[PhoenixRising]

Well I had a call from the secretary yesterday. Apparently the doctor should have told me to make a follow up appointment on my way out, and she said she had no idea why he told me I'd get a letter (I specifically asked him what the procedure was and he was very clear that I'd get a letter in around 3 weeks). So he is booked up for weeks and my appointment has been made for Apr 12th, grrr!

My friend who after reading the link I sent her, managed to by complete luck get a regular GP appointment with him as he was a locum that day, already has a physio referral!

I am in a fair amount of pain with my shoulder this week and not very happy. I want my physio referral and some bloomin painkillers! Still, I've been suffering with this for 16 years, what's another few weeks!

[littlekitty]

How are you getting on with finding help?
Have you got anywhere yet?

LittleKitty

[PhoenixRising]

Ack, can't believe it's 4 months since I posted this and I still haven't started my physio. I got some orthotics yesterday, the doc said my feet are rolling in which is meaning my ankles, knees and hips are out of alignment so it should help all of that. I hope so! One of them is higher than the other though which feels very weird!

I didn't even get onto the waiting list for physio for ages as there was a muck up with my follow up appointment so it was delayed and I didn't get referred until after that. Am in a pretty bad way to be honest. I thought my diagnosis would be a turning point, maybe it will be once I get the physio, but to be honest the fatigue is so awful at the moment I don't have energy to be active anyway and don't even know how I'll manage the exercises.

[PhoenixRising]

Started physio last week, at last! It took most of the appointment just to talk round what all my joints are doing (wow was that cathartic- talking about each joint and getting a positiv resonse instead of that blank, baffled look). Have got stretches for my foot (plantar fasciitis) and am going back this week to get exercises for shoulders and hips. She asked me to choose the 3 worst joints to begin with, so I picked those, might ask if can do knees as well as I realised I walk in a funny way to protect them which probably doesn't do hips, feet etc any good.

Am also going back to orthotics this week as Iam not getting on with the insoles, the right one is higher than the left one and makes the outside of my ankle and my little toe hurt ie is causing over-supination.

Am in so much pain today as I trialed some gluten (Iknow, I know). I just don't undestand why gluten would flare HMS pain. I know it is inflammatory but HMS isn't so why would it worsen it. I didn't get any stomach symptoms (but then my digestion and GERD is c**p ATM ayway). But like clockwork after 4 days- bam- joint agony. I cried when I sat up in bed this morning as my shoulders, arms and hands hurt so much. Got a sign language lesson and lots of driving to do today too. Ah well, I am 100% clear on the need to avoid gluten anyway!

Am feeling really discouraged to be honest. The ole sick and tired of being sick and tired business. I've managed to haul myself back each time I've got into a downward spiral but this time feels different. Concerned about my kids too. My 16 yr old has been having hip problems and then last week my 9 yr old son told me he struggles swimming breaststroke as his knee clunks. I do not want them to end up like me! I hope that as they are already diagnosed (well at least have hypermobility in their medical records) and we know what is going on, they won't end up in this kind of state. I keep explaining to my daughter that she needs to keep fit and active but unsurprisingly they are the two of my four children who aren't sporty or physical.