I am only pleased too know it's not all in my head.

[wisparolo]

Hi Everybody,It's took my 3yrs too get my doctor too do something about my condition i am 63yrs old always had a full and active life until 10yrs ago,i had a severe cold the doctor was called he said i had the asian flu and would take 8 wks too go,but a fortnight after my husband called the doctor out again has too all intense and purpose i thought i had been hit with a bus i could not move or get out of bed the pain was so intense,when the doctor saw what i was like he rang straight away for the nurse too come and take my blood,once taken i thought nothing would show up,how wrong was i the doctor rang too tell my husband not 2 go out he was coming straight round,when the doctor came he said the news was serious i had a muscle wasting diease and i would end up in a wheel chair,i was totally devastated has was my husband,the doctor said the enyzmes in my body instead of being say 29 they where 52.000 attacking everyone of my muscles,i was rushed into hospital into a side room it was touch and go until my emyzmes count came down,it took a year for me too fully recover and learn too walk again,i really don't think you ever really get over anything has serious has that then 3 yrs ago i had another bad cold which left me very tired and withdrawn blood tests showed under active thyroid put on levo 25mgs it was totally useless then another blood they upped the dose 2 50mgs it helped as it took me out of neutral and put in in first gear and there i have stayed for 2 yrs i am sick of telling the doctor (I am tired of being tired) i think he think i am imagining all this debilitating symtoms now he thinks i have CFS and have waited 3 mths for a appointment on too be told the hospital he was sending me too no longer take patients from so far away,he wrote too another hospital who inturn have referred me too a centre too be assessed with someone with know qualificatons,too talk about the questionaire

i had too fill in which took me 3 days too fill in,the appointment is for next monday at 1 o'clock

and the time given too talk too me is 90 mins i only hope i can sit that long and conscentrate on the questions asked without falling asleep,Please has anybody else gone through this i Feel so let down i cannot stop crying,also i know my question is long but i felt you needed too know the whole story.Thanks for listening.

[myhealthneeds]

Good to hear your very sad story. Thank you for sharing it with us. All the best with the appointment. Please let us know how it goes. Many people cannot get any appointments to see anyone on the NHS so it is good that you have this appointment. You will have to tell them that you might fall asleep and to wake you up! Many people have not had anything show up in tests so it is very interesting that you had results that showed abnormalities. All the very best.

[wisparolo]

Thank you for reading my story it means a lot too me that there are people out there who are suffering just like me,and i haven't made the whole thing up?has for the appointment i really do not feel like going and answer question after question and have too sit 90mins i know i will get agitated and frustrated and most probably cry and walk out i am so in a dilemma about it,after waiting all this for a appointment.

[Tearsofaclown]

Sorry to hear you are so distressed by the whole situation you are in, and that you feel like every step you take is with lead boots on. It's fairly typical of how everyone with CFS is treated, because it takes so long for the symptoms to 'hang-around' for, before the doctors recognise there's a problem. Anything less, and the doctors would put it down to post-fatigue from a virus or infection or illness, etc. You have an appointment to be seen by a Specialist, and that is more than I have ever been offered, and more than most are offered, too. Usually, it's a process of elimination, and once that's done, there's nothing left except CFS. After that, well, you're on your own.

I do think, the fact you have this opportunity to say how you feel, it should be grabbed with both hands, and you are in the driving seat, to take control and ask anything you'd like answers to. That 90 minutes could be seen as only brief when you experience such a lengthy condition, but it could also be seen as so much longer than everyone usually receives from any doctor, and you should use it to your own advantage. If you fall asleep and can't be roused, well, I'm sure it wouldn't come as any surprise to the doctor if they specialise in CFS. It probably happens every single time they interview someone with it. This is the one thing we do Best, fall asleep while sitting in a chair, and almost falling asleep while standing up, too!

You have been through the mill with your health, and that is also something that people with CFS have usually been through. You could call it one of the ex-symptoms, or ex-requirements, for it to appear years afterwards, in this very odd way. My blood tests have always shown something as being wrong, and with very high levels of inflammation. But, there is only so much that can happen to make our lives better, and until there's a cure, we just have each other to share it with, and hope, that a cure can be found, in our lifetime.

Please, try to see this appointment as an Opportunity. And, Please use it for You to Give them the Facts. Take Care.

[wisparolo in reply to Tearsofaclown]

Thank you again i have had my 2 dear friends up to-night before i came on line and believe it or not they have said exactly the same has you,so i am going too go too this appointment and i will not go too sleep i will have my husband by my side and i am going too tell them how it is and use this 90mins too my advantage not theres,then after if they think i am crazy what the hell,they certainly won't be the only ones,but i will be happy in the knowledge knowing i had my say?I wish i was going tomorrow because i am all fired up.And thank you again Tearsofaclown.

[Tearsofaclown]

Hi again, and thank you for letting me know that you are now feeling more positive about the appointment. I just wanted to add this little comment, to your reply.....

Please don't worry about being crazy - because sometimes it helps to be a little bit crazy. It really doesn't matter, just so long as the people who matter to you, are with you all the way. Laugh at yourself, and the world will laugh with you, not at you. A very true saying, and one that applies to me. I am always a little bit crazy, and have learned to laugh at myself, daily!!

Best Wishes,

Tearsofaclown.

[wisparolo in reply to Tearsofaclown]

I Am not really bothered about what doctors say either(but i would definately like too know what they write in there reports about you) i suppose it's a case of what we don't know won't hurt us but sometimes a little bit paranoia does creep in,but never the less i still wish i had it all over and done with,do they tell you at the meeting what the next step will be,because if they don't i will be asking,a long with all the other questions i have wrote down so keep everything crossed until i report back Monday night hopefully with good news.And thank you again Tearsofaclown.

[Tearsofaclown]

Hi wisparolo,

In my case, I was seen by a Rheumatologist and after some physical tests and he'd seen all of my scans, etc., he asked if I had been double-jointed as a child. I still am with certain joints! I was told the most likely diagnosis was Fibromyalgia, and Chronic Fatigue Syndrome. I do have other health issues, connected with muscles and nerves, so the whole picture was explained to me, there and then. I do hope you are this fortunate, at your appointment, and that the doctor will be as patient with you as mine was. My condition has deteriorated since then, and my local doctor is my point of contact. However, there aren't many people who understand the condition, so please don't expect it to be completely cut and dried. Those questions you have listed are an extremely good way of getting your points across, so please make sure you remember to take them, and give them to the doctor when you arrive. That way, they can be worked through, and answered at the appointment. Taking control of the interview might be hard, when you're feeling so low in yourself, so I do hope you are taking somebody with you, who can take a stand, if you can't on the day. You sound as though, you've got it all in hand, and are eagerly awaiting the appointment, so please keep positive, and go for it..... Wishing you every success, and I look forward to hearing about it, afterwards. Take Care of yourself.

Tearsofaclown.

[wisparolo in reply to Tearsofaclown]

I really really want too stay in touch with you so i can give you support like you have given me,and reading what you have written above you have been too hell and back twice the same has me so i will be here for you whenever you need me,and i am sure come Monday with everybodies good wishes i will sail through it so keep everything crossed until i report back after my appointment.

[Tearsofaclown]

Hi again, Sorry it's taken me so long to reply. I've not been well for a couple of days, and have barely been on the Net. But, I hope to stay in touch with you, too.

Good Luck for Monday. I hope you've got loads of questions ready, written down, and you also have someone to go in with you, to back up your health issues, if you don't feel confident at the time. It helps to have someone else there, as they will be listening to the doctor, and may hear something that you forget. Very helpful afterwards, when everything disappears from the mind, when you try to recall it! I've been there so many times!! Keep focused and determined, and tell the doctor exactly how it is for you, daily. He or she will have to listen, as this is YOUR time at the appointment. Good Luck, again. I shall have you in my thoughts. Take Care,

Tearsofaclown.

[wisparolo]

Just too let you know i am all prepared with my list and all my paperwork what i have gathered

about this debilitating illness,me and my husband have been on all night putting everything in

order and i am very determined too get my message across,i have told my husband what i miss out he has too fill in,but i don't think i will falter i have my family my friends and best of all you,and it be you who will be foremost in my mind tomorrow has it's you who truly knows how

crippling this horrible illness is,i will let you know the outcome tomorrow night keep everthing crossed for me. Bye for now.

[wisparolo]

Well been for my appointment i didn't see a doctor i was seen by a clinical assessor who was very very nice she asked me loads of questions most of which i had the answers she wrote everything down she had all my case files on computer which she referred too quite often she definately was maticulous in her questioning,all the time this was going on i was getting colder and colder my husband had taken his jacket off because it was that warm in the room,in the end i couldn't talk too her my teeth where chattering that much and no it wasn't nerves,i was really really cold any way too cut a long story short in her opinion I have not got CFS/ME she said it's all relating too my thyroid has i said in my introduction too this site and was taking 50mgs levothyroxine for it,anyway she going too have loads of tests done B12 calcium another

thyroid test has i need something more too go with the levothyroxine i think she said T3 she said she was going too ring my doctor when i left her too make sure all these tests are carried out,and she has made another appointment for me too see her again at the end of March and she deals with ME not thyroid then if i feel any better after this she is sending me too see a sleep therapist and a rumotologist i am so so please i went too see her,she also said the root cause too this was my rabdomylitis which in a round about way i guessed it it could have been that, she also recommended that my doctor review my all my tablets so on the whole not a bad day's work. I do hope you are feeling a little better and i haven't taxed you too much.Bye for now.

[tettridge]

Hi Wisparolo

It seems like quite an ordeal for you but with a pleasing outcome.

I imagine the ME on top of all the others is a bit of an easier one to cope with. Goodness you have had a rough time. I don't know if my stories are relevant to you but this is just about the ME alone I know you have other problems that will stop you doing things

you want to. (why is it always our good things that we tend to stop the first).

I have had ME for a number of years and it is amazing what knocks you for six, do not feel guilty because you find yourself unable to do something or carry on doing something. I just popped down to the supermarket and while queuing at the checkout I became exhausted and had to leave, the shopping was done and I could not wait , I just managed to get to the car and sat in it for ages (I think I fell asleep) before I was able to drive home without the shopping.

I use this just to show it hits at the weirdest times even though you know after a while your limits they are like a bit of elastic and they will push and pull you and then (perhaps) settle down again.

Take care and the kindest of regards

Terry