Any ideas what might be wrong with me? Would I be wasting a GP's time? Lots of symptoms listed!

[Whattodoandwhy]

I have an interminable inner voice that is saying "don't waste everyone's time". I know this is down to upbringing. So could someone please give me a nudge?

I'll try to give you all my symptoms and then you can tell me if this is normal or not. Hope that's ok :)

I have had joint pain since early teens, maybe earlier. My knees used to cause me constant, aching, pain. I was told this was normal, and growing pains.

I first put my back out so badly that I couldn't move when I was about 13. I started seeing an osteopath at that point. No GP. They would manipulate my spine every week, but new things would be out each time.

I had severe SPD during pregnancy, and ended up on crutches and in a wheelchair. Physio didn't help, but they confirmed I was hyper mobile (ticked all 9 boxes, but only just IYSWIM, I can't turn myself inside out, but can do the minimum for each test).

I sleep with a pillow between my legs to support my hips, and a shaped pillow (if I sleep on anything else I will be in pain for days). I still regularly have vertebrae out of place, but now just live with the pain as I can't see the point in having them put right when something else will go straight away.

My hips cause me pain and stiffness if I walk more than a few miles.

My thumb joints bend the wrong way, they are weak and can't support any weight. The more I use my hands the more all the joints ache and stiffen. Particularly my thumbs. I find writing with a pen particularly painful (even the special shaped ones only help a bit).

I often twist my ankles if walking on rough ground, regardless of how sensible my footwear.

Elbows will often suddenly give me sharp pain and then not bear any weight easily for a few days.

I bruise incredibly easily. I never remember where they come from. Looking at my legs now, I can count 18 bruises, ranging from small to huge black and swollen. I don't remember getting any of them.

Sometimes I get spontaneous bruising on the back of my hands. It feels like a pop, then pain and then a huge swollen bruise appears. No trauma involved.

I keep getting dizzy spells. Maybe only one a month. Always when I'm upright (so not when I'm standing up or moving). Usually when I'm sitting still. It feels like the room has suddenly been thrown sideways, only lasts a minute or so.

Other issues include very heavy periods with serious flooding (had hormones checked to see if menopausal a couple of years ago and nowhere near), always had very slow bowels (maybe go twice a week?), recurring cystitis (probably not linked but you never know), tilted uterus (again probably not relevant).

I'm just tired of being in constant pain.

I'm only mid 30s!

I've never actually mentioned all this to a GP (other than individual symptoms, never mentioned joint pain outside of SPD).

any ideas on what could be wrong with me? Would I be wasting a gp's time?

EDS is very badly understood by doctors (sometimes even rheumatologists). The boxes are just "guidelines", but actually the reason they are guidelines is for people who score too few, not too many as EDS causes early osteoarthritis, and so people who have EDS can often be stiff rather than bendy (right now, I only score about 3/9 due to mixture of osteo and hormones, yet I have confirmed diagnosis). Anyway, I would bet pretty much anything that you DO have generalised joint laxity-the pain from standing is looseness/hyperextension in the hips and knees. You really need to see someone (ie a rheumo) who has at least a passing understanding of EDS-most GPs have never even heard of it!.

Definitely mention Ehlers Danlos. It sounds like your GP has not been great, so put the suggestion in front of them.

also, my contact who has it got cross because it was listed somewhere as "really unusual". In my humble opinion, it's not that unusual but if your GP has never come across it they might need that possibility put on the table in front of them.

I'm shocked that you have had to cope with so much without anyone sending you for a proper referral.

Having just read up on EDS on NHS Choices, I would definitely mention all the symptoms (give the print out of them above, to the GP) and mention EDS, because on the NHS website it states that it is unusual enough for many (most?) GPs to not have come across it before, or have any idea how to treat it!

As the OP said, get second and third opinions, if necessary, although, if your GP refers you to a Rheumatologist, they may have experience of EDS. Suggest it. Don't say you have 'looked it up on the Internet', say a friend suggested it! (I am a professionally qualified researcher and still get the rolled eyes, and even insulting remarks, if I mention that I have researched something!)

I do have the fear of eye rolling if I go in with a self diagnosis. But EDS seems an incredibly good fit for all my symptoms. My DDad and DGM, both had early arthritis, were hypermobile, and had back and joint pain throughout life. DGM was disabled by it. No EDS every suggested though.

GP booked :) it's not until the 26th though. I've booked with the GP who has done his most to help me in the past (when I saw him for the first time for my 6th bout of cystitis in 3 months, he immediately sent me off for tests to try to find out why I was suffering, all other GPs just gave me ABs and fobbed me off). I'm hoping he'll see it as a challenge and not dismiss me.

That sounds good. You could keep a symptom diary until then (note down what's aching, when, if anything brought it on, that sort of thing) which might be helpful in working out what's going on.

Really good luck with your appointment and let us know how it goes (until then there's always ).

Good ideas :) thank you!

If anyone else has any other suggestions I am very happy to hear them.

Thank you to everyone who has posted. You've bolstered me to get help. Wish me luck!

I would suspect that the dizziness is POTS

This is a massive jump to make - causes of dizziness can be neurological , vascular , cardiac , endocrine etc etc ...

See GP , don't expect 1min to provide all the answers , just the first step...

May I suggest keeping a symptom and food diary for ALL aches/pains/period symptoms/bloating/dizziness to see if there are any patterns? There's a fair amount of evidence of the link between hormones and hypermobility. It could be that your hormones are out of whack, which is causing the heavy bleeding and so the dizziness, and is making your hypermobility worse.The fact that you had SPD during PG implies you might be sensitive to hormonal changes. Might be worth asking GP to test your oestrogen/progesterone/testosterone levels again?

I second trying small classes pilates for hypermobility. If you Google, you'll often find pilates lessons led by physios. Email them and mention hypermobility - if they ask sensible questions and perhaps offer you an initial private lesson, you'll know they are good.

PS these guys are worth talking too as well. Good luck! hypermobility.org/

Thanks everyone. I've had a look at POTS, and it doesn't fit with my symptoms. I do know that my hip pain is worse at certain times of the month, and had put that down to hormones, but the general joint pain is always there somewhere.

It takes very little to put my back into spasms. Last week it was hanging out the washing (so just lifting my arms up, no heavy lifting).

I'm very careful about how I lift things, but any turning, twisting or bending is likely to twist my vertebrae out of place, I can't really do less than I do.

Pilates would probably be good for strengthening my back too. What I really need are some amazing Arnie-esque back muscles, that'd keep things in place!

Good luck, OP! I'm glad you're seeing your GP.

Don't forget, strengthening your stomach muscles will help build a stronger core, and a stronger back.

Look at a low histamine diet too. It can help.

Agree Madizzy The Hay diet is worth a look at too, it's not eating fruit straight after a meal (only when you're properly hungry) I have it for breakfast and get aching when I forget!

Also it's not eating heavy protein and carbs together at the same meal. So no turkey sandwiches but turkey with salad\veg. Some people are bad with chicken. Pork of any type is bad for aches and pains too.

Definitely hypermobility.

There's an excellent website, organisation and forum, though the Facebook page seems to be more active now.

I have hypermobility but only got the 'syndrome' part post preg, thyroid dosing issues, low ferritin, low vit d and a down ward spiral to bad posture, worse pain etc.

Sorting the thyroid, ferritin and vit d helped but physio and Pilates (and I'm actually benefited by Forrest yoga bit been doing long enough to know what to do and not to do hypermobile wise), and general strengthening is slowly helping.

Id recommend investigating vit d levels, and vitamin c (taking) as helps collagen. Eds is characterised by weak collagen. Basically you need to do everything possible to boost your muscles and posture.

I've found that a really good sorts physio (who works with dancers etc) has been most beneficial plus Pilates though that's a slow thing to learn.

A mner suggested looking at Rosemary keer; this article single handedly explained everything I needed to know about both the downward spiral and upward spiral. You could also look at the Alexander technique.
www.londonhandtherapy.co.uk/wp-content/uploads/2010/04/Ch09-143-162-9780702030055.pdf

Use supports to help where necessary until you gain strength. I'd recommend trying to see a rheumatologist but ideally one who is in the field of hms. The forum linked to the hms website can give info on this.

I'm so sorry - it's a shitty invisible thing but I did find my OC health extremely supportive.

Post preg definitely I've suffered from periods and ovulation hormones. It's settling for me slowly but the mirena was suggested as a good option. On the website it's not as they tend to say progesterone is weakening, oestrogen strengthening, however everyone else has told me oestrogen aggravates the pain. I believe the mirena is the equivalent of 2 mini pills a week so quite low.

I was very lucky that my GP knew how bad hms can be, sadly all they can do is help with pain killers.

Painkillers are needed though to help you do physio and do more and sleep. Then as you get stronger you can take less. I've found amitryptline too woozy but some find it really helpful. Paracetamol and ibu, occasional cococdamol is helpful.

Magnesium is also really really helpful I've found, both supplements and Epsom salt baths (make you sleepy!) and a spray.

Massages, foam roller, physio.

My NHS physio took the approach she would with a patient with cfs and taught me about pacing (bean theory) with goals.

She also taped my back in a big cross (like a mei tai sling) which was AMAZING for my shoulders at the time. They had slumped forward terribly. Pilates is so good as so much is done lying down (or in half foam roller) and it helps to stabilise shoulders by lying flat on ground. My physio gave similar exercises.

Thank you so much for this advice. I've definitely noticed my shoulders rounding in the past few years. I try to stand up straight, but then my physio said my hips tilt too far, and my back is too curved, so I shouldn't stand as straight as I can IYSWIM, so I spend the whole time standing at some awkward intermediate point that feels all wrong, not sure if it's good or bad

I've been the same. Strengthening my core has helped. Literally lying on back, arms straight up flat on floor, pushing lower back into the floor (I have si joint issues and too much curved in there)and cycling legs slowly has slowly done wonders (engaging core all the time) But physio designed / chose that for me, your unique issues could be different. It's helped flatten my upper back.

The other thing he advised re upper back is like constructive rest (Google position, Alexander technique) but put a rolled up small towel between shoulder blades down back following spine iykwim, arms by side or out and just lie there for a while. Lying length ways on a foam roller also does this and in body control Pilates (imo the best) we do a lot of moves like this too.

There a good body control Pilates app, first bit free, second have to pay, but is extremely good at giving you the basics.

On the hms website they've linked to research of most effective treatments and Pilates comes out on top for all areas eg pain, strength, daily living.

My teacher is attending a hms Pilates course in sept so I'm looking forward to what she has to say!

Hms / eds really struggle with proprioception, physio and Pilates and any activity eg swimming or dance can help this.

Hello again, sorry to spam!

I really am starting to feel so much better for sorting out minor thyroid med issues, vit d and ferritin and was just musing about the importance of vit d for hms/eds as, essentially we need to body build and muscle needs these things.

I found this paper which I amazed about, really promoting vit d and calcium (I've been taking extra with magnesium actually as I'm bf to help supply around period, as well as rheum said it was good) as well as screening thyroid function. Do take magnesium too though; boots do an all in one but I take a bit more on top as I find it so helpful.

This is defiantly along side the physio - I've just noticed how much better my back now looks as well as feels and my shoulders are getting so much stronger. I just feel more 'together'. But I'm pretty sure it's the vit d too.

www.ncbi.nlm.nih.gov/books/NBK1279/

Not spamming at all :) all really useful, thank you. I had my thyroid checked not long ago (due to recurrent cystitis) and all was normal, so that's one thing covered. I've been taking vit D for a while and think it might help a bit.

Hi whattodo ,

I would just like to second Clarellas comments about Vit D. It seems a good blood level of vitamin d is very helpful to people with hypermobility type problems.

I wonder if you have had your level checked, and what kind of dosage you take. It should be a daily amount , to get your blood level up to at least 100 , preferably a bit more.

vitamin D will help many bodily systems fulfill their potential when it comes to repairing damage, and minimising further damage. Reducing bone pain etc etc.

    We  are discussing it over here,  

www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect

 have a good read ..!    

When you get your bloods checked, ask them to add Vit D to the list, if they have not already!

BTBH

Just got back from my GP :)

Thank you for all the great advice.

I told him all my symptoms and how long they've been going on for. He made lots of notes, checked my joints. Asked about the pain. Then said he was going to start by sending me for a blood test. He wants to check for rheumatoid arthritis as well as gout and thyroid issues. I suggested a vit D test and he agreed (but said he really didn't think I lacked it). He's also testing for low calcium and various other things.

I mentioned EDS and he didn't dismiss it (he'd already commented on how I was tall too). He didn't suggest what it might be and said that he wasn't going to refer me for X-rays right now. We'd wait for the blood tests to come back, and then the next stage would be a referral to the rheumatologist.

So he basically offered to do all the things I was expecting to have to fight for :)

He said it can take up to three weeks for the results to come back, which is quite a wait, but I do feel listened to. Which is a good start!

Argh! Have just realised I didn't mention bruising easily! Ah well. Must remember to say it when I go next

I'll report back in September if I get any answers :)