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

53 replies

Whattodoandwhy · 17/08/2015 10:02

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?

OP posts:
Mabelface · 17/08/2015 10:06

Google elhos Dahnlos syndrome.

PurpleDaisies · 17/08/2015 10:09

That would be my suggestion too.

Op you should go and see your GP. Why do you think you would be wasting their time?

PeterParkerSays · 17/08/2015 10:14

Bumping this for you as I have no idea what this condition could be but no, it's not normal to have the symptoms you are having and yes, you should see a GP, and another one, until you get referred for a proper diagnosis.

The dizziness / bowel things may not be related to the joint issue so there may be 2 or 3 issues to get to the bottom of. Write the symptoms down as a list and get thee to your GP. The flooding and cystitis may be solvable by prescriptions from your GP which would be a start, and don't be fobbed off.

Whattodoandwhy · 17/08/2015 10:14

Because (quoting my DM and DDad) "everyone has aches and pains".

I also feel a bit like they'll say "so you've had this for 20+ years, you've been to the GP before, and you've not mentioned it until now?" And fob me off.

Ehlers-Danlos does cover a lot of the symptoms. I don't have stretchy skin, but it is soft. Hypermobility does run in the family. As does "the family back".

OP posts:
Whattodoandwhy · 17/08/2015 10:15

Xpost, thanks.

The dizziness is a new thing (only in the past year or so) so very likely unrelated.

OP posts:
PurpleDaisies · 17/08/2015 10:17

From your post your health seems to be getting you down and affecting your life-no (sensible!) GP would think you were wasting their time. Definitely pop along to see soneone. Flowers and hoping you can get to the bottom of what's causing you to feel like this.

macthecat · 17/08/2015 10:17

I second ehlers danlos. Look into it and go to your GP

honeysucklejasmine · 17/08/2015 10:18

Have you ever seen a rheumatologist? Sounds like you need to. Flowers

PurpleDaisies · 17/08/2015 10:19

My sister has hypermobility and has found Pilates helps her joint pains because having more muscle means more support for the joints. Would this be something that you might be able to try? Not as a substitute for seeing a doctor though.

unweavedrainbow · 17/08/2015 10:23

I have EDS and you sound like me when I was younger (I'm 25 now). Mine has got massively worse since then and I'm now a wheelchair user, but still, you really need to see a rheumatologist. If your pain is anything like mine was then I'm massively impressed that you're managing to get by without strong pain relief! Do you have any family history? EDS often runs in families.

Whattodoandwhy · 17/08/2015 10:23

Never seen a rheumatologist. Yes it is affecting my life. My hobbies used to be horse riding and origami. I haven't been able to ride for 10 years now. The pain in hips and back is too much. My hands hurt after doing origami (I know it sounds stupid) and it makes me worry that I'll lose that too.

I've been coping with pain for so long. I take ibuprofen when I can't sleep with it, but otherwise try to just ignore it.

Sitting here now, I've got a throbbing pain in my shoulder. A stabbing pain just below my left collar bone. My knees ache. My elbow hurts, and my hands hurt from typing.

They're all smallish pains, but it just gets me down sometimes.

I have to consider how much walking there will be before I accept an activity. Standing for an hour or more sets off my hips and back.

OP posts:
Whattodoandwhy · 17/08/2015 10:26

I have been planning on starting Pilates. I've put it off because I don't want to be the irritating class member who can't do half the exercises.

Unweaved Flowers no family history as such, but certainly of joint pain, arthritis and hypermobility. I'm mid 30s now. I think it's finally hit me that this isn't "growing pains" and if there are things I can do to slow the decline, I should be doing them!

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achieve6 · 17/08/2015 10:26

the second I saw this I thought EDS.

Def get that checked out. I know someone who has it and she has physio twice a week. it's really important to get this looked at, no way are you wasting a GP's time.

achieve6 · 17/08/2015 10:27

PS I hate it when people say "everyone has aches and pains". I'm 39, regular exerciser, now actually overweight and I don't have aches and pains.

Whattodoandwhy · 17/08/2015 10:30

Achieve, I do remember saying something to someone about how "we're all in pain all the time in some way", and they looked at me like I was mad and said, "nope. I'm not"

I couldn't quite believe that people go through life with moments of no pain. Not even a niggle. I don't think I do quite believe it yet. There must be something! And therefore it must be me trying to make a fuss out of nothing.

OP posts:
unweavedrainbow · 17/08/2015 10:37

The best treatment for EDS is physio- but you do need to find a physio that knows what they're doing, as the wrong exercises can lead to more damage. I would suspect that the dizziness is POTS but, as EDS can be linked to other heart problems, it's worth getting a referral to a cardiologist as well. Joint Hypermobility Syndrome and EDS are now generally considered to be the same thing, but an EDS diagnosis is normally made if there are other things going on as well as hypermobility (for you, bowels, periods, bruising). I don't want to scare you, but as someone where EDS is likely ( a score of 9 IS very hypermobile, you only need 4/9 to be diagnosed) and as you are still relatively young, it's important that you get on top of this now as people with EDS can often degenerate quite badly as they get older and end up disabled. Good management can stop that from happening, especially physio and bracing/orthotics. Good luck Smile Flowers

FunnyNameHere · 17/08/2015 10:41

Make a doctor's appointment! Do it now. Less chatting, more phoning the Dr. :)

Iqueen · 17/08/2015 10:41

I'm no medic, but it sounds like childhood arthritis to me. This could cause neuralogical pain and dizziness, if damaged joints are impacting on nerves.

See your GP with a print out of the details you have given here. He/she will probably refer you to a Rheumatologist, in the first instance, especially if you have not had any X-rays concerning your symptoms.

GP's are used to people getting to the end of their tether, before coming to them!

Good luck!

PeterParkerSays · 17/08/2015 10:42

OP, I'm 38 and as I sit at my PC nothing hurts. Yes, I take cod liver oil and can tell if I stop taking it for a few weeks but I have no clicky shoulders, painful elbows or other joints causing problems. Nothing - what you are experiencing is not normal.

achieve6 · 17/08/2015 10:42

Whattodoandwhy - I've had chronic pain for a couple of years to do with a specific illness, it was awful.... but it sounds to me as if you have been dealing with it for most of your life!

It's not at all you making a fuss, don't think that for a minute. I'm so sorry you are having this experience Flowers

Whattodoandwhy · 17/08/2015 10:43

Thanks unweaved :) I shall make an appointment. The physios here were awful for SPD, but you never know.

When I did the hypermobility tests for my physio, she said I could do all of them, but I can't do more than that IYSWIM. So I can touch my thumb to my wrist, but no further. My arms probably go to about 10 degrees, but no further.

I'm not insanely double jointed.

I mentioned having hypermobility in passing to a GP friend, and she said that proper hypermobility meant real looseness and double jointedness, and that just because I tick the boxes doesn't mean anything. So I felt a bit dismissed really. Why have the boxes then?

OP posts:
ppeatfruit · 17/08/2015 10:44

Agree about seeing your GP pleeese (don't overthink things, it's your pain not anyone else's).

BUT there are a few things you could try and see how you go with them; (forgive me if you have considered these Grin ) look at your wheat\gluten consumption; its such a common food that few people think that it could be making them ill. Even 'healthy' organic wholemeal Shock. There's a book out called 'Wheat belly' By William Davis M.D if you don't believe me.

Look at your blood type Dr. Peter D'Adamo is the author, and cut out the foods that are avoids, everyone I know who has done it are amazed at how much better they are. Good luck Grin

Whattodoandwhy · 17/08/2015 10:45

Xpost with everyone :)

I will definitely see my GP, and I'm stealing the "I've just got to the end of my tether" to explain why I've not gone before.

Not sure whether to just present symptoms or mention ehlers danlos.

OP posts:
PurpleDaisies · 17/08/2015 10:49

Not sure whether to just present symptoms or mention ehlers danlos.

Tell them what's been going on and that you are worried it might be Ehlers Danlos. They often ask if there's anything particular you're worried about it being anyway.

Whattodoandwhy · 17/08/2015 10:51

Sounds like a plan :)

Thank you all for not dismissing me Flowers

OP posts: