A short sad history of ME/CFS

Trialia

Mrs_P_Pincher wrote: »

I was not prepared to accept a diagnosis of an illness for which there is no test, no treatment, and infinitely variable symptoms. To me CFS, like FM is a bucket diagnosis. Fibromyalgia just means that your muscles hurt. It is a symptom not a disease and in most cases the cause of that symptom is not difficult to find.

Neither was I, to begin with. I've had all the tests the NHS offer that would find it if it were anything that could be found. They had no other conclusion they could reach for those symptoms and the test results.

Thing is, here, they know exactly what set(s) off fibromyalgia in me - I am severely hypermobile, and that is something they can't do anything about. There's no treatment for it beyond resistance training to try to reduce the dislocations - which flares the FM symptoms - and painkillers. The damage is already done because the collagen is faulty.

Please don't assume everyone with a diagnosis of FM or CFS just took it and left it at that, because it's really not the case. For a lot of people, either is a diagnosis of last resort.

Edit: Also, fibromyalgia does not just mean "your muscles hurt". There's a whole float of other symptoms that go along with it, not least of all the cognitive impairment of chronic fatigue and poor sleep quality. If you're going to be ignorant...

prettypeach_2

Mrs_P_Pincher wrote: »

I was diagnosed with CFS last year by my GP and an endocrinologist. It didn't take much digging through my blood results to find that I was actually servely deficient in stored iron, Vitmain B12 and Vitamin D. The B12 and the D are under control now and my health is much improved. If the NHS can sort themselves out and give me the iron therapy I need as I cannot take oral supplements, I might well be fixed in teh foreseeable future.

I was not prepared to accept a diagnosis of an illness for which there is no test, no treatment, and infinitely variable symptoms. To me CFS, like FM is a bucket diagnosis. Fibromyalgia just means that your muscles hurt. It is a symptom not a disease and in most cases the cause of that symptom is not difficult to find.

Mrs P P

Did you get tested for vitamin and mineral deficiencies privately then Mrs P?
As far as I know, the NHS don't do this so maybe everyone can't easily afford to go down this route.

TOBRUK

Mrs_P_Pincher wrote: »

I was diagnosed with CFS last year by my GP and an endocrinologist. It didn't take much digging through my blood results to find that I was actually servely deficient in stored iron, Vitmain B12 and Vitamin D. The B12 and the D are under control now and my health is much improved. If the NHS can sort themselves out and give me the iron therapy I need as I cannot take oral supplements, I might well be fixed in teh foreseeable future.

I was not prepared to accept a diagnosis of an illness for which there is no test, no treatment, and infinitely variable symptoms. To me CFS, like FM is a bucket diagnosis. Fibromyalgia just means that your muscles hurt. It is a symptom not a disease and in most cases the cause of that symptom is not difficult to find.

Mrs P P

I'm not quite sure how to take this post ... are you implying that people who have M.E. are in effect accepting a diagnosis to which there is a simple answer and can be resolved by taking vitamins?!

I have M.E. and was diagnosed in 1997 firstly by a GP after many months of tests and was referred to an M.E. specialist who after many visits confirmed the diagnosis. Ofcourse the diagnosis and illness itself has been difficult to accept but it is an illness and a very difficult one to manage and cope with! I'm sure many who have fibromyalgia will be hurt to hear someone say that it just means that your muscles hurt!!

I would also like to say to those who are reading this thread and who have M.E. that you should not even consider taking vitamins or iron tablets without consulting your doctor as it could be very dangerous especially if you are taking medication.

prettypeach_2

I've researched deficiencies and M.E. and taken several different vitamins and mineral supplements regularly - no miracle cure as yet.
The latest one I'm trying is sea kelp supplements for iodine.

TOBRUK

prettypeach wrote: »

I've researched deficiencies and M.E. and taken several different vitamins and mineral supplements regularly - no miracle cure as yet.
The latest one I'm trying is sea kelp supplements for iodine.

It's up to you if you research an illness and self medicate and I wish you well. However, doing any such thing without medical supervision is dangerous and would urge people not to do this.

Have you any medical background? It's fine if you want to do these things for yourself but I urge you or anyone to refrain from impying or encouraging anyone on this forum that to do so is ok or that it is harmless. This especially if some are taking prescribed medication!!

M.E. and other chronic illnesses/conditions are very difficult to cope with and I'm sure when some see posts like this some will be tempted to do something similar.

I have M.E. and virtually housebound. I catch illnesses very easily - I have only just recovered from a bad dose of flu which was the second dose within 4 weeks with only 6 days apart! I am in constant pain with some days being worse than others and am on numerous medication.

I would love a cure or even some relief from symptoms BUT I would not self medicate or try anything without discussing it with my GP which includes any suppliments or vitamins!

mardatha

Your GP will do tests if asked nicely and if the tests might help you. Mine does. I've had B12, ferritin, and vit D all checked 3 monthly.Also I personally don't agree that you shouldn't take vitamins or supplements without asking the doc. It's very common for GPs to be stuffy and sceptical over ME and many will just brush you off without even thinking.
I don't understand what you mean that vits etc might conflict with medication -- I thought there are no drugs to treat ME ? or did you mean any meds for other conditions maybe?
I never ever catch colds - even when in close contact, and when all my family do. That is since I started high dose vit D 15 months ago, which I found out about on FluTrackers. I look up things online and I decide and then I either take them or don't. It's not my GPs health here, its MINE.
And I'm not advising anybody to take anything. I'm just telling you what I take

TOBRUK

I have meds for M.E. to treat the symptoms and some to keep the pain under control - my M.E. is pretty bad.

I have a very good relationship with my GP who is very supportive and does try different things to help, who also insists seeing me every 6 - 8 weeks. She is certainly not stuffy or sceptical about M.E.

I am not against any individual doing their own thing and self medicating however I do think that it is important to keep your GP informed, especially if you are seeing them about the illness. I do however think that taking different vitamins and suppliments is dangerous without consultation when suffering with an illness.

prettypeach_2

TOBRUK wrote: »

It's up to you if you research an illness and self medicate and I wish you well. However, doing any such thing without medical supervision is dangerous and would urge people not to do this.

Have you any medical background? It's fine if you want to do these things for yourself but I urge you or anyone to refrain from impying or encouraging anyone on this forum that to do so is ok or that it is harmless. This especially if some are taking prescribed medication!!

M.E. and other chronic illnesses/conditions are very difficult to cope with and I'm sure when some see posts like this some will be tempted to do something similar.

I have M.E. and virtually housebound. I catch illnesses very easily - I have only just recovered from a bad dose of flu which was the second dose within 4 weeks with only 6 days apart! I am in constant pain with some days being worse than others and am on numerous medication.

I would love a cure or even some relief from symptoms BUT I would not self medicate or try anything without discussing it with my GP which includes any suppliments or vitamins!

Oh !!!!!!!

The fact is that most doctors hardly know their !!!!!! from their elbows about a lot of things they 'should' know about so I'm not going running to them asking them about vitamins. I have a hard enough time seeing them when I really have to.

Yes, I do have a background in medicine but I'm at a loss as to why you've suddenly decided to jump on my post as some kind of example of evil-doing. I was not 'impying or encouraging' anything, merely pointing out to another poster that vitamin supplements don't seem to be a miracle cure for M.E. as it might be taken that they had themselves been implying.

I have M.E. myself and really can't be arsed with bizarre lectures thank you!

prettypeach_2

TOBRUK wrote: »

I have meds for M.E. to treat the symptoms and some to keep the pain under control - my M.E. is pretty bad.

I have a very good relationship with my GP who is very supportive and does try different things to help, who also insists seeing me every 6 - 8 weeks. She is certainly not stuffy or sceptical about M.E.

I am not against any individual doing their own thing and self medicating however I do think that it is important to keep your GP informed, especially if you are seeing them about the illness. I do however think that taking different vitamins and suppliments is dangerous without consultation when suffering with an illness.

I) THERE ARE NO MEDICATIONS 'FOR M.E.'

2) Good for you! That is far from the experience of many M.E. patients so don't try to tell the rest of us what we should and shouldn't do!

:mad:

TOBRUK

prettypeach, I was not lecturing and it may be that I took your post in the wrong way but I certainly wasn't meaning to attack you in any way or implying that you were evil-doing as you put it! I am certainly not looking for an arguement. You certainly have bad experiences with GP's but not all are like that.

I apologise if I offended you as this wasn't intended.