People with CFS/ PVFS/ ME - how did you get diagnosed?

[Grockle]

Long story short... After 2 years of symptoms, many blood tests, physio, chronic pain, constant fatigue of varying levels & GP not finding anything wrong, I am now depressed. It wasn't getting better with meds, so I;ve seen a psychiatrist who suggested it could well be CFS so has referred me back to the Rheumatologist.

I'm tired & just want to feel well.

Rockin D its good to hear you are better it gives us all hope.

I've been tested for just about every defeciency and virus going at least twice and it always comes back normal, I get copies of my results to show my bosses (both doctors) and google the results and its always in the normal range, apart from the thyroid tests which fluctuate, sometimes its low, sometimes normal and sometimes high, there's no pattern to it or reason why, the new theory is that its a symptom of whatever else is wrong with me and my thyroid just gets confused (there was a much more medically sounding reason but I can't remember what the doctor said )

Wow rockin that is a really reassuring story - I am glad you are recovering so well and I'm in awe of your cycling!

I was a bit surprised that, when my doctor referred me to the specialist, they didn't insist on more tests first (this is what my doctor expected to happen). I thought they might ask for more detailed tests like the vitamin deficiencies you mentioned. I wonder if the specialists will do those tests?

I have been tempted to try lots of supplements (and it's one of those things where everyone is telling me to... everything from multivitamins to hideously expensive glucosamine) but I have decided to wait until I see them (5 weeks) and I will be specifically asking about deficiencies.

Also rockin I wanted to ask (if it's ok) - how did you get ill in the first place? Was it sudden, after an illness, or gradual? I am just wondering how you became so deficient in those vitamins. Did the doctors ever explain how it happened? (apologies for being nosy!)

That's interesting Booki. I'm glad it helped. I'm veggie so if I stop having dairy and wheat, it leaves little to eat. But maybe I should try - I live on carbs atm (toast, cereal) because they don't require any preparation. And if eating meat but no dairy/ wheat got rid of this, then it would be worth it.

I wonder if I should try cutting 1 of them out first. Maybe wheat first? The thing is, it sounds tricky to do and I'm so rubbish at concentrating & thinking that it feels like a massive task!

In desperation last night i resorted to google, I came across some really interesting information about endometriosis, apparantly it is linked to thyroid problems, cfs and ibs all of which I have, I also have horrific periods which is what I first went to the doctor about but they have always been treated as a secondary symptom rather than the cause, so much of what I read last night applies to me so I am off to the gp with a print out of everything I found to insist she sends me for tests, or do you think I'm just wishfully diagnosing myself because I want an answer?

Today is a bad day, I'm in agony, head hurts, throat hurts, hands hurt, legs hurt, I'm working but having just dropped the kids to school I'm sat in the car because I don't have the energy to drive home. I'm working an extra 3 hrs this week and the thought if it terrifies me.

I've tried cutting out wheat, sugars, eggs, dairy nothing makes any difference

Oh smiling, I'm so sorry you are feeling so unwell. I hope the day gets better for you. The information you have found sounds very interesting. I hope GP takes note and arranges appropriate tests.

This morning, I've spoken to my GP surgery to arrange my new fit for work note, saying I am fit but need reduced hours. I've spoken to work and have a big meeting tomorrow morning with senior management and I've done a little bit of sewing, so I feel like I've been productive. Now I need a nap. Not sure sure how I'll manage any work, but if I don't try, I won't know. My insomnia is bad atm and I'm awake for about 3 hours every night. I wish I could sort that out.

Good luck tommorrow Grockle

good luck tomorrow Grockle, glad today wasnt too bad fuzz!!!

im in torment do i go back to work next week, or do i wait till after my counselling assessment... i miss work so much but dont want a rook off odd weeks sick on my records...........OH now i have ME!

RockingD I suspect basic deficiency are common especially since the range of normal is set quite low. I supplimented both for some time and eventually got my GP to check B12 and D levels. Both were by then just in the normal range but I suspect should have been high due to supplimentation. I will never know if D deficiency (as I suspect due to the high dose corticsteroids I was treated with - I always get weaker when taking them) was what started my CFS.

Thanks belle, it was really nice to be back but I am now suffering for it. Sore throat/ears and massive headache, and my calf muscles are ridiculously tight and painful. 4.5hrs FGS that's all it took!

today im anxious really anxious!!! i havent had painkillers and now i know about it. Im worrying about work! and what to do for the best, should i go back next week, should i take more time off, can i do it!

im sick of seeing the same four walls but if i dont go to bed during day i will do things i shouldnt, and regret it when i have to bein bed the next 2 days because of that.... ggggggggrrrrrrrrr

My dd 18 has recently been diagnosed with ME, (I've not yet read all the messages in this thread but I will) it sounds as though she's been lucky, was suffering for 4 months with absolute fatigue, over Christmas & during A level revision time. Our GP's have taken her symptoms seriously, several blood tests later she was referred to CFS clinic and following a lengthy appt with a specialist Dr was diagnosed with ME. She's learning to cope with it but it's heartbreaking to see my once very fit & healthy dd be reduced to a sleeping bundle on the sofa. It looks like Uni is now out of the question for her, I feel as though she's been sapped of her present (she should be out partying & having a good time) and robbed of her future. I'm struggling with "why her, why us" where has this come from, what have we done wrong! What could we have done differently. Will read through this thread with interest.

Am sat in a&e with chest pains, have spent all day struggling, got home from work and past out, DP worried sick and can't understand why I'm not, how can I explain that I aam secretly hoping they find something so i can say "see there is a reason I feel ill"

Hi all! Just in answer to your above queries re my return to work...

Yes! real running! I have to get fit enough to retrain and pass the physical side of things :( I was talking about it with my friend today and got a bunch of palpitations again! argh! don't know what to do!

Fuzz I get the sore throats and headaches too. It's about 95% of the time and it's horrid! not sleeping well atm either.

Brightwell there is nothing you could've done to prevent your Dd from getting this illness. You must remain supportive and positive for her though (I'm sure that's not in question). There is no reason why she can't have a good future, she just has to listen to her body and manage the illness. My mistake was not listening to my body or good advice and I'm now in year 13...

Oops! posted too soon.

Smiling I hope they do find something so that you can be well again.x

Brightwell, what a worrying time for you, i agree that if she listens to her body she wil get better...alot of us on here are different in we have a family to care for and as a mother you just get on with it....your DD is lucky she as got you , someone who sounds suppportive worried, and can see the affects..stick with us on here , im sure if you have any questions some one will answer....

Smiling, did the chest pain casue the collapse or was the collapse as well as the chest pain.sounds a daft question but it can be relevant, have they said anything yet??? give you a diagnosis, used big long words they expect you to understand...... I hope you find an answer.....xx

Any news smiling?

I understand the need to have a 'reason' to feel so unwell. I managed to explain this to my manager yesterday, the fact that if I had a broken leg nobody would think twice about the fact I can't do certain things, but because I don't look ill I get paranoid about what people think of me.

Brightwell it must be very scary seeing your DD go through this :( and I agree there is nothing you could have done, it just happens and is grossly unfair. I think she is lucky though that she's got you looking after her, somebody to gently remind her if she's pushing herself too far.

Have just got to work and really want/need to go home. This isn't good :(

Got through to the OU and can defer my exam for about 6 months. Will send in doctors note but I may decide not to bother, I don't know. I feel like I've got no chance of doing a degree at all.

Oh, fuzz, it's awful, isn't it. I don't know how you ladies manage with work and stuff. the very thought of that makes me feel sick. A couple of times a year, I clean the church (when the regular cleaner is on holiday.) It's only 8 hours a week and I can't even manage that. I have to take the kids to help with things like mopping the floors and sweeping the halls. Even then it puts me in bed for days and days. I don't know anything about these things but surely workplaces have to make allowances for you?

smiling, any news. Terrible as it sounds, I too hope that the hospital finds something, then you have a reason to be ill and you might get better.

Brightwell, what has happened to your DD is not your fault. There is nothing that you could have done differently to prevent her becoming ill. You are trying to understand and help her, that's the main thing. I'm sure that she will get better as long as she rests now and listens to what her body needs. It's when you can't/don't do that that things get worse and it becomes much harder to recover. Younger people are much more likely to recover from ME than oldies like me, anyway, and having a supportive family can only help.

Solo, running, good luck. Don't do too much because you'll only set yourself back and make it harder to pick up the pieces.

If this is full of typos, my apologies. I have changed all the ones with red underlines but my brain, eyes and fingers aren't working too well this morning.

fuzz I know what you mean about needing to go home I spent 6hrs in a&e, it turned out to be muscular, the muscles in my chest contracted and went into spasm, my heart is fine so I guess I can tick heart disease off of the list of potential causes of why I'm so exhausted! Today my chest, shoulder and arm are still painful and I missed precious sleep last night so am running on empty, started work at 7.30 and have a 12hr day ahead of me, I'm so tired I could cry. I'm going to try and sleep as much as possible while the children are at school but I'm not sure how long I can manage at work, I've just had 8wks off sick and already dropped my days from 4 to 3 which has meant my boss dropping a day at work too but its the length of my working day thats getting to me, I just can't manage 12hrs but there's no way to shorten it and I can't afford to take more time off right now I need to get finances sorted from last time before I can even consider taking more time off.

I made it through the day... got home, collapsed in a heap of tears.

I was brave and went to tell my manager that I was feeling unwell - we had spoken about this yesterday as I was worried I would be too embarrassed. Had to swap my tasks around a bit and it still didn't feel like enough. Manager was very nice and reassuring but the plain fact is, I am not well enough for this. I was hoping to push through these three weeks before going to full time hours but it's just not going to happen. I am starting to accept that I am very likely to need a different job in the long run :(

(((((((((HUGS )))))))))))))))))))) fuzz... i think we all have big decisions to make...and its ones that we dont want to make...xxx i got DLA form today (here we go again!!!)