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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!

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.

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.

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!

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.

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

hashtagwhatever Wed 13-Nov-13 20:53:54

good luck with your appointment.

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.

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

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

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 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.

QueenofWhatever Mon 04-Nov-13 11:56:53

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.

PrimalLass Mon 04-Nov-13 10:18:55

I was going to suggest paleo too. It is worth a shot. Read the success stories and forums on Marks Daily Apple.

peggyundercrackers Mon 04-Nov-13 10:07:51

if you are considering going private there is BMI hospital at Ross Hall and Nuffield in glasgow. You could call and ask if there is a neurologist you can get an appointment with - if there is someone you can see they normally see you within a week.

good luck - sounds like your having a real shitty time just now.

QueenofWhatever Mon 04-Nov-13 09:21:29

Sorry things are so tough for you, I have a lot of sympathy. I hae lots of similar symptoms (joint pain, exhaustion), and am currently having a bad flare up. My GP is finally referring me to rheumatology, and doing another set of blood tests. I've also got him to include VItamin D this time, which you should also ask for.

There is plenty of private healthcare in Glasgow: Nuffield, BUPA and BMI all have hospitals if you want a private first appointment (just type private health Glasgow into google, or ask your DH to do it). Chances are you will see the same doctor as you would via the NHS.

I would strongly recommend that you get better pain meds. I have dihydrocodeine, which is an extra strong form of codeine but doesn't leave you feeling totally stoned. It is an opiate and therefore potentially addictive, but if your pain is interfering with your daily life so much, you may benefit from it.

Keep on at your GP or switch, sometimes they need pushing.

LoveSewingBee Sun 03-Nov-13 22:12:05

You may not have MS at all, but just in case you do get such a diagnosis, then this article may be of interest. If you google MS and iron blockage you will get many more articles as it tends to get a lot of attention in the medical press at the moment.

RandomMess Sun 03-Nov-13 17:12:12

Haven't read the whole thread as it's so long - what about psoriatic athritis? There is no test for it I'm afraid - but it comes and goes and can be very debilitating. You would have to have a realtive that has psorasis because you can gave it without having symptoms IYSWIM???

FreakinScaryCaaw Sun 03-Nov-13 17:07:42

Glad you have good days and hope that you get some help soon.

roughtyping Sun 03-Nov-13 15:01:36

Lola - that makes sense!

Scary - yes I do have ok days, I just don't moan on those days grin and only really post about it when it's bad IYSWIM. It's quite hard having those good periods I think because then doubt creeps in and I think, am I over reacting, is it really that bad? Etc

FreakinScaryCaaw Sun 03-Nov-13 13:50:53

Blimey OP you're having it rough, so sorry to read this. I hope you get a diagnosis and soon!

Is someone doing chores for you? Are you sleeping when not at work?

A couple of my friends have fibro and ME combined and sound like you but they have some ok days.

Sending positive vibes your way and hope you get some answers asap x

lola0106 Sun 03-Nov-13 13:50:22

Ive been told it's because it's quite rare and they need to monitor the effects over a longer period of time to make sure that's what it is. There is no test that can say yes that's what it is unfortunately.

roughtyping Sun 03-Nov-13 13:41:03

Mine - I've had lots of blood tests but I'm not sure what for. Is it your white blood cell count they look at to check immune system? All bloods came back normal.

Sewin, that's really interesting. I don't think it's surprising that people get a diagnosis and are told later it was wrong, and vice versa - everything like this (sort of pain/tiredness related) seems to be so vague.

roughtyping Sun 03-Nov-13 13:39:01

ZiggY I will PM you at some point. I feel exactly the same - no one really is bothered about making this get better and I feel so tired that chasing things up is a long way behind sleeping just now.

Lijkk - I started to look into it a little bit but couldn't really figure out how to go about it. How would I arrange something like that if i decided to go down that route?

Lola - so sorry to hear that. Why can't they diagnose before 30?

lola0106 Sun 03-Nov-13 11:44:56

I would recommend looking into Ankylosing Spondylitis. It's an inflammatory condition that effects most joints, can cause problems with vision and Chron's is a symptom. It's very difficult to diagnose, especially if you are under 30. The doctors think I have it but can't really diagnose it yet as I'm only 23. They can give me medication though which helps with pain and mobility. Good luck.

lljkk Sun 03-Nov-13 11:19:52

to OP: can you get a private initial appointment? I know it's expensive but it lets you jump faster into the system. You've waited long enough and it's messing up your ability to work now.

Ziggyzoom Sun 03-Nov-13 11:12:21

I'm watching this with interest. I have suffered with joint pain and stiffness in various joints since having my 2nd DD nearly 6 years ago. I had various blood tests and the rheumatologist decided I was mildly hyper mobile and this was the issue. More recently X-rays have confirmed arthritis in my elbow and hip, but the consultant examining my hip didn't think my hyper mobility was significant. I also experience the aura associated with migraine but no other migraine symptoms and I was diagnosed with Discoid (limited to skin) Lupus 15 years ago. I have Reynauds too and a general feeling of crapness which I am fighting daily.

I am convinced there must be an overall diagnosis for what I am experiencing but no one (but me) seems to be interested!

I hope you get some answers soon and I will watch this thread with interest.

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