How do I get a diagnosis?: I have no idea where to... - EDMESH

EDMESH
1,854 members340 posts

How do I get a diagnosis?

Kmaria
Kmaria

I have no idea where to begin. I think my doctor will just laugh at me if I say I think I have CFS. But all the random things I've been going to her for all these years might be connected in just one thing. It would explain everything! Is there a simple test she can give me?

15 Replies
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I too, have had random things happen to me & I finally 'connected the dots' a short while ago. I was requested by my doctor to have a full barrage of blood tests (when I had had them- and more - as recently as 6 months ago: I felt like a pincushion!) She also mentioned I could be depressed, which I disagreed with (i was fed up with no diagnosis & feeling so exhausted all the time, but not depressed)

Needless to say, the blood tests all came back normal. I have - after a 'sit in' at the doctor's consultation room- I got a referral to the local M.E. clinic (which is AT LEAST a 6 month waiting list). I am about 3 months into my wait for this clinic.

Good luck if you take this path. Just DON'T be fobbed off by the doctors! Hope you eventually get some answers xx

If you have ME/CFS then you will be depressed because of the frustration of feeling constantly unwell. Depression is not the cause. Antidepressants will help buy they won't fix you.

Unfortunately there is no test at the moment. It is a case of ruling out everything else that could be causing your symptoms. Ask your doctor if she thinks you could have ME or CFS and see what her reaction is. Also ask if there is a ME clinic you could be referred to where they would be able to confirm the diagnosis and give you advise BUT do not take up any offers of going on a GET program. They have been found to be harmful and make things worse.

Good luck

Kmaria
Kmaria in reply to ME65

What's a GET program?

Hidden
Hidden

GET is Graded Exercise Therapy. It has been proven not to help ME/CFS sufferers but that doesn't stop criminals, biggots and the NHS promoting it. The insurance industry does not want to pay out to ME suferers, so they pay corrupt Doctors and civil servants to spread disinformation. It is much like when the tobacco industry paid doctors to promote cigarettes as being good for you, and harmless.

CBT Cognitve Behavoioural Therapy is another dishonest intervention suggest for ME/CFS. It consist of try to brainwash a sufferer into believing that they are not as ill as they think they are. Clinic trials have consistently shown that it provides no physical benefit whatsoever.

The US Medical authorities have dsimissed GET and CBT. The U.K. Government does not believe in them either, but for political reasons, refuses to interfere in the running of the NHS.

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If you are unsure of your diagnosis, then I suggest contacting Action For ME or the ME Association. Unfortunately in this country most doctors remain very ignorant of the condition, and many are actively hostile.

From your question my guess is that you probably don't have ME, because symptoms do not occur randomly. That does not mean that you don't have some other kind of neurological/immunological disorder or other chronic medical problem that needs investigating. It may also be a dietary, environmental or lifestyle problem.

Try keeping a diary of your symptoms and anything else that might be relevant.

Kmaria
Kmaria in reply to Hidden

Thanks. Yes I understand why the GET program doesn't work. It sounds similar to something I've been trying by myself these last couple of years. It's exhausting!

These are some of my symptoms.

IBS

Clinical depression

Sore glands

Hot and cold/ difficulty regulating temperature

Bad short term memory

Wake unrested

Weak/jelly legs

Struggle to get out of bed

Fatigue/ tired (worn out) almost all the time

Easily exhausted

Neck ache

Double jointedness / hypermobility

Aching joints (which I'd always put down to hypermobility)

Difficulty in concentration / finding the right words

And I've always had these since my early twenties. I'm in my late 30s now. The difficulty in regulating my temperature has recently become worse. I thought I was going into menopause early, which has led me to begin researching my symptoms over the last six months or so, and find it's not the same as menopause, and the most likely cause is CFS when it's all put together.

tobby1428
tobby1428 in reply to Kmaria

this is how I am now,i had a very bad case of guillane barre syndrome 22 years ago.i suppose I am lucky to be alive! but life certainly "sucks".as I get older(62now) more problems seem to rear their ugly head.sorry I cannot offer you any advice,but all I can send you my best wishes !!!

Hidden
Hidden in reply to Kmaria

If you believe that you might have ME/CFS then you should stop any progressive exercise strategy as it could be very harmful. Pacing is a better approach.

Prof Mark VanNess has posted a video on Youtube explaining the science why aerobic excercise is harmful for ME/CFS sufferers. He also gives examples of pacing exercise. (search for Mark VanNess Exercise)

For explanation as to how the crooked psychisatrists fiddled the results of the PACE GET/CBT trial data, search youtube "How's That Recovery?" The PACE trail showed that the GET and CBT used did not work, but the fraudsters who authored the report deliberately lied to saved their reputations. They also blocked the release of the trial data, so that it could not be properly peer reviewed. Those running the PACE trial concealed that they had clear conflicts of interest, so in every sense the PACE trial is worse than garbage.

The NICE guidelines are mostly ambiguous about GET and CBT. Because GET and CBT are not defined in detail, it makes arguments for and against difficult. As Prof Mark VAnNess explains it is possible to have GET that does not involve aerobic exercise, that can be marginally benificial for some patients. Of course that is never what happens in practice. The same is true of CBT. The PACE version of CBT was to try an brainwash their victims into agreeing that they were not as ill as they believed they were. However CBT could alternatively be some kind constructive advice, such as encouraging you to pace yourself and rest appropriatley.

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It may not be that your abilty to regulate body temperature has become worse. This summer and autumn has been relentless in having temperatures above room temperature. Hopeful now that temperatures are cooler, you will start to feel more comfortable.

Graded Exercise Therapy. This doesn't work for people with ME as the diagnosis of ME is based on post exercise malaise. When you do some exercise you have 'payback' either after it soon or later and some people take a very long time to get over just one small piece of exercise. Some people have put effort into exercise as they so much want to get well again but instead it makes them much worse. One woman I know just told me that she used to swim a lot but once she got ME she just cannot swim because she is too exhausted and it makes her feel nauseous. It has now been discredited. GET and CBT were promoted as treatment for ME/CFS by the PACE TRIAL...in fact they are still recommended in the NICE Guidelines as the guide has not been revised to reflect the information.

Most people believe that pacing one's activity is the only way to live with ME, not doing as much as possible when one feels a little better and then collapsing in a heap as a result. We all wait for more news about the causes of ME and a really good, effective treatment.

Kmaria
Kmaria in reply to myhealthneeds

I've always done a little then rested. Then tried a little more, and rested a bit more. Throughout each day the rest breaks have to become gradually longer and the doing something gets shorter until I'm exhausted. I repeat this daily, all my friends think I'm really lazy. And until I began getting CFS pop up more and more with more of my symptoms being added to my search so did I.

myhealthneeds
myhealthneeds in reply to Kmaria

Yes I know what you mean. But you understand your own body and it is useless pushing yourself just to look good to others. I remember lying on the settee for hours wanting to get a drink but not having the energy to get up and walk a few steps to get it. I knew I was not lazy as that wasn't me to lie around but I did it, and kept doing it until eventually things did begin to improve. But I had CFS not ME with all the other symptoms. But I just met a woman who forced herself to go on and would not admit it to herself or anyone else that she was feeling so rough, and now her body has just refused to go on and she's in a bad state.

Its nice to see people responding to your questions,its a pity the gps do not.the health service is in serious trouble,too many cuts,too many bosses,too many immigrants and finally a government that does not give a toss!

Kmaria
Kmaria in reply to tobby1428

What do you think I should do?

Write all your symptoms down. EVERYTING, even if it seems insignificant. Take the list to your doctors. If she laughs at you refer her to the ME Association website. If she does not believe you. Ask her if she will refer you to a local pain clinic or ME/CFS service. If you don't get any success then change doctors. The ME Association may be able to suggest a sympathetic GP in your area. I've had ME and Fibromyalgia since I was 8 years old but only got diagnosed when I moved into a good area with a brilliant support system, GP and pain clinic.

ps. I got a diagnosis in 1998, I am now 62!

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