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

[roughtyping]

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 ). 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
:( 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 :(

I'm sorry for the massive essay!

I am feeling so, so down. I really don't want to face work. Have woken up crying about it. Am on a course today (and for last two days) which has been fine, just tiring - I went to bed at 7 on Monday and slept for 12 hours and was still tired. I am so stressed as nothing can be organised in y head, there are a million thoughts there and I can't pin them down.

Oh, and I had a horrible visual thing at a shopping centre, y aunt said it sounded like migraine?? Blind spots, kailedescopic triangles across the middle of my vision, everything jolting around me. It was horrible. Don't know of the big strip lights could trigger that?

I honestly feel a bit desperate. I'm worried for my health and I'm worried about how stressed I am. I just want to sleep.

And sorry, I know I just come on here for a moan!

Visuals sound a bit like visual migraines or scintillating scotoma. Sorry you are feeling so unwell. Hope you get a diagnosis soon.

Quite a few of your symptoms do tie in with MS, even the visual disturbances. Fatigue, numbness, pins & needles, weakness. I hope that you get your Neurology appointment soon and get some answers. My DH has MS and he had the MRI scan and lumbar puncture to confirm the diagnosis. He was a bit sore after the lumbar puncture but that passed after a few days. If they find oligoclonal bands in the spinal fluid then that is a sure sign of an MS diagnosis.

Please try not to worry (easier said than done, I know!). If it is MS there are many treatments available and new drugs coming out all the time. The most common form of MS is relapse/remitting and you can have long periods of remission (even years) between relapses.

Are you on any meds now at all?

Take care. Neurology sounds like a good call. I hope you find out the cause. Is someone taking care of you, and will you be able to get to your appointment ok?

Thanks for all the kindness. I'm alright just trying to keep my mind off it all! No meds no - just OTC pain killers for joint pain. Ouch. I keep getting a metallic taste in my mouth, like when a bruise is pressed IYSWIM. Coming home hoping the neurology letter will be here, no sign yet.

But yes, thank you so much for being kind and patient. Yes DH looks after me, he is amazing. Has completely picked up the slack in the house when I'm so tired.

Sorry for bumping this again. Feeling really bad. Was off for October week and able to sleep when I needed to and eat well. Back at work now and really struggling. Feel like I've hit a brick wall. Have been in a lot of pain - all of my joints in my right side were horrendously sore for one day - kept going over my right ankle, shoulder was leaning down etc. then next day was sore all over - the 'bruise' pain again - ad metallic taste. Could feel the pain in my teeth. Been very forgetful. Hands very hard to move and tingling again. Feel very low.

Still waiting to hear fro neurology. Keep meaning to phone but appointment line is open 9-5 and I've been going to work for 8 and leaving at 6 as there's too much to do.

In the process of requesting flexible working hours so I can work four days instead of five.

Feel totally shattered and just done. Feel so guilty an lazy and most of all tired

Go back to your gp. If you need to change your work patterns because of this you need some more investigation. Has anyone tested your immune system?

Many of your symptoms fit with MS.

However, MS is very difficult to diagnose, eg some people are told they have MS and years later they are told that no they don't and also the other way round.

If you do get an MS diagnosis then there will be medication. In Italy there is a lot of MS research (because there are a number of MS clusters there) and one of the things pursued is that it may be caused by too much iron (I believe, but could be other metal) in the brain causing blockages. One person seems to have been cured(wife of this professor).

There is also a research centre in Belgium, which stresses that people with MS can have a full life, including children as it is not a life limiting disease.

I hope you get some clarity and some help soon.

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.

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.

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.

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?

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.

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.

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

Lola - that makes sense!

Scary - yes I do have ok days, I just don't moan on those days 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

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

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???

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.

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.

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.

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

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.