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Don't know what's wrong with me, neither does the doctor

(86 Posts)
roughtyping Sat 21-Sep-13 08:10:27

Hi everyone. Just wondering if anyone who's experienced similar symptoms could lend an ear!

I've got terrible joints, I get a lot of pain in them (I cry at some point every day just now blush). The pain comes and goes - most of the time it's 'background' pain but quite often becomes much more insistent. Like my body is shouting at me.

My back and knees have always been worst, but recently my hands have been terrible (hard to text on phone, manipulate small items eg blu tac, can't currently do things like make scones as cant coordinate hands to rub in butter etc). It's almost like my fingertips are numb - I still have feeling but it's like they're sort of flat. Hard to describe. Also getting a lot of tingling/pins and needles/episodes of numbness in hands and feet recently.

Also have began having problems getting dressed - not every day though, and with 'annoying' items like tights and hoodies.

Have had 2 episodes this year, both lasting a day, where I could hardly walk and just couldn't seem to coordinate movements properly. DH was having to help me get to bathroom etc.

I'm constantly exhausted. I wake up and I'm ready to go back to sleep. At any point during the day, I could lie down and go straight to sleep.

I'm very down/anxious/grumpy, particularly with DH
sad which is crap, as we've only been married a month. He does so much to help me and make things a bit easier.

I've previously been to physio who suggested i have hyper mobility syndrome, however was unable to do much but gave me exercises to do and things like a wrist splint and scissors which are easier to use (a brilliant help as I'm a teacher and do a lot of cutting out). However I was discharged as there wasn't much else they could do.

Been back to GP recently. First time he took bloods, 2nd time gave results of variety of blood tests which were all fine/normal, and did a sort of 'coordination' examination, I assume to rule out neurological things, which was fine as well. He took more blood and I've to go back this week.

He suggested arthritis. I've been tested for rheum before (can't remember what it's called) and it came back negative.

I just don't know what to do. I've always been told t just take ibuprofen ever day, but a friend who's a nurse recently was shocked that I've been told to do this for years and not been given any medicine to protect my body against negative effects. I'm just sck of feeling g like this, I don't want to do anything anymore, I just want to sleep sad

I'm sorry for the massive essay!

Forgot to add that I'm also primal/paleo. Definitely have a look at Mark's Daily Apple. Cutting out grains and sugar has made a huge different to my health.

lljkk Mon 04-Nov-13 13:21:04

Private appointments: ask your GP which hospital you've been referred to & what kind of specialist. Then phone the main hospital switchboard & ask which senior consultants they have in that specialism. The switchboard will probably have phone numbers of each consultant's PA or secretary (yes they have them). Else you can google for the same person to find their private practice pages. Ring & ask how soon & at what cost you could get a private appointment (likely within a week, £60-£80 is a typical charge for just the consultation).

If your needs are severe enough you will leapfrog straight back into NHS treatment,only the initial appointment need to pay for.

It's all against the ethos of the NHS ideals, obviously. I know people who find the whole possible procedure quite offensive. I'm not sure those moral issues are your problem, though.

peggyundercrackers Mon 04-Nov-13 20:48:32

lljk that sounds cheap - I had a private consultation with a gastro doc and it cost me £250. I think I was in for 20 mins and didn't have any tests.

lljkk Tue 05-Nov-13 18:17:47

eek. I wonder if price depends on specialism, too.

roughtyping Sun 10-Nov-13 17:47:37

Have had quite a few 'up' days this week. Was driving yesterday and it occurred to me that I wasn't tired and wasn't in pain - a lovely moment.

Phoned the hospital on Friday, they'd made an appointment that day. It falls during the Christmas holidays, which suits for my work... Think I will phone again on Monday and ask to be put on waiting list for any cancellations. Even if not, it's next month.

good luck with your appointment.

roughtyping Sat 26-Apr-14 08:39:58

Hi all, sorry to raise an old post! Just going back into a painful period after a few weeks of goodness.

Had neurophysiology appointment who referred me for neuro tests (EEG I think it's called) which all came back normal, I've to go back at the end of the year but think that's that. Have just started seeing a rheumatology physiotherapist with an interest in hypermobility, she is so lovely and understands it very well which is amazing.

I've managed to lose 25 pounds since the start of the year which is great and seems to have helped loads. I'm part time at work, now four days, which has made a massive improvement to my general health and I feel more able generally to cope with life.

I'm having my first big 'slump' of the last few months. I am so exhausted and sore, particularly the back of my feet, my back and knees. It is rotten. I always forget how bad it is.

I also had an episode in I think February, where both knees seized up. I cried a lot! It lasted for a few days and I got very down, and panicky, as I thought 'this is it' and my legs were screwed. I couldn't walk, I could barely move my legs without horrible pain. But it left on it's own.

Since then I've had a couple of episodes of 'hot knees', where my knee is painful and very hot to the touch, which hasn't happened before. Does that suggest arthritis?

Having a tough time with family just now, my granny is in a hospice etc, and I think it's maybe stress that's caused the latest flare in symptoms.

Anyway, no closer to a diagnosis of anything, I just like that I have this thread as somewhere to remind myself of how I've felt in the last few months.

Hope you're all well smile

roughtyping Sat 26-Apr-14 08:50:04

Sorry just thought of a couple more things!

I have been generally 'clean eating' - not always sticking to it but trying to on the whole. I don't know if it is helping any of my symptoms but it is helping me view my body in a much more positive way IYSWIM.

I also had a full blown migraine at work. It was during my time out of class, so no kids. It started with blind spots, no balance, fuzzy vision, then I was writing out the kids' spelling words and didn't think id done them correctly - asked another teacher to check and apparently I'd written total nonsense, just random letters. Then I couldn't remember who people were or people's names, then the nausea and headache kicked in. So I was sent home. It passed about 8 hours later I think. Went to GP so that it was recorded, BP etc was fine, they said it just means I'm not able to go back onto combined contraceptive pill.

I've also been having episodes of dizziness ad my BP in the morning is low, around 40BPM, although it's always fine during the day when taken at the GP.

duende Sat 26-Apr-14 09:02:39

Not sure if this has been mentioned but have you had your thyroid checked? I have hashimoto's - autoimmune thyroid disease. When my thyroxine needs increasing I get mad mental fog, trouble concentrating, tiredness, low mood and pains in all my joints. Fingers, wrists, elbows, knees, ankles...

It gets better when thyroid is under control.

Hope you find the answer and feel well again!

RubySparks Sat 26-Apr-14 09:10:20

Agree with duende worth checking thyroid. I have had very similar experience and symptoms. I was first diagnosed with coeliac disease so avoid gluten and then hypothyroidism - also Hashimoto's which means it is autoimmune. I am on levothyroxine and getting the right dose is crucial.

I think chronic long term stress was at the root of my problems but I am also menopausal as older than you and take HRT too.

Hopefully you will get some answers soon and find a way to feel better. I have also had fibromyalgia and cfs suggested to me but with the other issues I feel there must be more of a reason. It is hard to cope with the ups and downs but pacing has helped me, mainly meaning don't overdo things when you feel well, tempting though it is.

I was also very low on vit D, all of these things are inter related rather than individual things I think.

Best1sWest Sat 26-Apr-14 21:18:18

Have you had your calcium levels and pth checked. I've had very similar symptoms, pain in joints and muscles, especially legs and lower back, exhaustion, poor memory, headaches but also indigestion, all caused by a benign adenoma on the parathyroid gland (not thyroid). I'm waiting (and waiting) for a small op which I'm told should cure it.

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