Anyone has Chronic Fatigue Syndrome or similar? Help needed! Post Reply

[Lily pomme]

Hi ladies,

I have had long-term unexplained extreme fatigue and have had lots of tests done by many GPs over 3 years,with no diagnosis given.

I would love to chat with other women who had the same experience,
my GPs havent diagnosed me with CFS or ME or anything, they basically gave up on me and said it was 'psychological', which is what they say when they dont have the answer.

I would love to hear from other women and see if any of you used Wibble remedies or Eastern medicine or treatments (ex acupuncture) and if they worked!

Many thanks!
Margot

[headshrinker]

Hi Margot
You have clearly had some unsupportive Doctors. You might want to change GPs. It is tricky though as it is diagnosed through ruling out other things rather than having any key identifiers itself.
I am a Counsellor and worked with a lot of people with CFS (sufferers often have related depression/anxiety issues). I would recommend looking at resources/support online for CFS/ME. Noone will judge you for not having a diagnosis as many of them will have had similar struggles to get their condition recognised. Even if you don't have it, the advice on managing your fatigue will still apply. Here is the ME Association's London contacts page as a start point : http://www.meassociation.org.uk/2009/09/greater-london/
If you do get a diagnosis at some point, this stigma about it being psychological still remains and will be one of the things you have to learn to manage as part of the condition I'm afraid.
Best of luck!

[supergirl]

Hi Margot
I was the same and found a solution that works for me. PM if you want to chat.
Good luck it is horrible.
Sx

[Mummyputney]

Firstly remember that however long this feels it is temporary and that you are not stuck with it. Feeling stuck with it and believing you are stuck with it is one of the main reasons people do end being stuck with it. There is light!! It's just the case that "if you do what you have always done, you will get what you have always got", so clearly something needs to change and it sounds like you need a bit of help with that and someone who an help you refine what you are doing.

Secondly, on the medical front have you seen a functional doctor? They can look at things that your standard gp just don't have the resources to look at, from gut disfunction to thyroid to hormones to nutrition etc. Dr mantzourani (google her) is incredibly supportive, empathetic and knowledgable. She has helped many people in the same boat come out the other side who are now totally fine. And if she isn't for you then there are many other functional doctors you can shop around for.

Thirdly, and importantly, I highly recommend an online programme called ANSREWIRE. It's geared for people in your situation and works on the premise that any illness, no matter how physical, physiological, real, biological etc becomes entrenched in our psychology and nervous system and unconsciously we train ourselves to experience it every day and deepens and deepen those neural pathways. It's not expensive and is a seriously of online videos which are actually fascinating and make you feel like you are having your hand held through the whole process. It sounds like a commitment. In many ways it is. But really the investment is so worth it when you come out the other side. These things rarely just get better "by themselves" unfortunately so while it may feel like it's too much effort, annoyingly it does require a bit of effort to recover but soon the momentum will carry you through.

Given that you have been reassured that there is nothing sinister going on, it really sounds that you have had to blunder your way through this without any support and that With the right hand holding and guidance you can probably find your way out quite easily and maybe even quickly. It doesn't even need to take that long.
Best of luck

[Honeywell21]

My son had Chronic Fatigue for 2 years when he was 11 and wasn't diagnosed for a year until blood test results revealed he had had glandular fever......which was a complete surprise but he always had a problem with his glands being up quite often.
He ended up not wanting to participate in sports because it would result in a bout of him being off school for a week ......
there were moments where he would say he just wanted to be a normal boy like everyone else,his friends were very good with him which did help.
He's now a wonderful 19 year old......whom on the odd occasion does have a chill day to recharge his batteries but that is very few and far between.
Do get in contact if you need support.

[Needcoffeenow]

When you say everything checked out, has your GP done blood tests specifically for Vit B12 and Vit D? I had chronic B12 deficiency (pernicious anaemia) picked up by chance while being checked for something unrelated. It is quickly sorted with B12 injections and the effect was incredible - back to my normal energy levels within a week or so. My Vit D was also v low and that is managed with tablets. Like a lot of mums I was experiencing post-natal tiredness but I realise now it went on far too long and I wish I'd gone to my GP about it sooner.

[Catmum]

Yes, ME for over 35 years now. I don't have any mental health problems like depression or anything, just plain old ME.

I have tried therapy, gradually increasing exercise and activity but that hasn't improved it. There have been a couple of times when I really thought it was all over and done with, only for someone to come home with a virus and have the whole thing re-triggered!

I have been very, very fortunate in that I was often in the 0-30% well range, housebound and often bedbound but now stay mainly in the 30-70% well range which is fantastic

Things that improved it for me: rest: more than you think you need, really clean diet, so organic straight from the tree, ground or animal type of eating, eat as little processed food as possible. (that would include even simple things like jam, condiments etc). If you do get good days, some kind of movement/exercise but rest like hell for several days afterwards!

[Braintrainer]

Hi Margot,

You might like to check out Raquel's Abreu's story here: http://www.braintrainuk.com/raquels-sto ... ofeedback/

I'm sure Raquel would be happy to speak to you and describe her journey to recovery.

Regards,

Stuart

[chorister]

My wife had what turned out to be post viral fatigue, rather than chronic fatigue - they look very similar, but PVF does pass.

She saw two very good specialists in CFS whilst trying to untangle it - Dr Richard Morgan, a GP specialising in CFS at the Chelsea and Westminster, and Dr Bansal, a consultant specialising in and researching it (he's at Spire St Anthony's in north Cheam - you will have to Google his NHS practice). We also met Trudi Edginton who specialises in treating it and was recommended by Dr Morgan (sorry, try Google again). My wife did not ultimately go to her for other reasons, but we were both very impressed.

Hope this helps and that you get over this ghastly thing soon. It is 99% unlikely to be in your head, so dismiss that.

[Marmot-in-london]

There is a good service at the Maudesley you can go private about £800 for a multi professional assessment and psychiatry as well which is usefull they know more. you will be able to get it on NHS but my friend wanted private.
I did speak to a helpful sec but can't remember her name if you ring the Maudesly switchboard they will put you through.
Good luck

[Lily pomme]

Thanks so much for this, ladies.

Yes I was tested for many viruses/ and glandular fever too
Lyme, and similar. I saw a ENT doctor as I had dizziness, and a tropical diseases specialist at St Georges , nothing came up in their tests.

I'm now looking for a homeopath/ naturopath that could help me..LEt me know if you know someone good near SW19 .
Ideally I would like to see a endocrinologist, as Im pretty sure its hormonal
(I have weight gain, puffy face, all symptoms of thryroid pb but tests are ok). I have also a high white blood cell count which means infection/ inflammation in body, but GPs cant do anything as not trained to do so. I am thinking of changing GP's very soon, (tried different GPS for 3 yrs)

Thanks so much for your help !

[Lily pomme]

Tahnks so much Chorister for this,

I will contact those doctors for sure! I hope I can ask my GP for a referral to see them, I'll look into it

I have been tested for anemia/ Vit B12 deficiency etc, all normal
of course I was given antidepressants as its the easy option for gp's...

[Mummyputney]

Dr mantzourani is a private gp who specialises in endocrinology and hormones

[Goldhawk]

When you say your thyroid results are ok, did they give you the actual figures?
Did anyone check your T3 levels?

[mmb]

Hi Margot
from what you describe I would say you have an autoimmune disease.
I have got one and I am currently seeing the London Clinic of Nutrition. Check their website you should find some information more accurate to your symptoms.
The first thing they recommend is to eat gluten free. So perhaps you can try that and see if your symptoms improve.
Feel free to PM me if you would like to chat.