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Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by Lily pomme » Sun Feb 26, 2017 5:18 pm

[quote="Sunshine_State"]Hi,

Thanks for that sunshine state,

I dont have any neurological pbs ( fainting, tremors, cognitive pbs) so i should be ok..! but thanks for the info, its always good to hear from different experiences

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by Sunshine_State » Fri Feb 24, 2017 11:33 pm

Hi,

Just adding another (remote) possibility to consider if more tests don't reveal anything conclusive: chronic fatigue is also associated with a number of neurological conditions.

I was diagnosed with CFS as a teenager, and also had a high white blood cell count, dizziness and sleep problems. My GP at the time was fairly unhelpful, and it gradually improved of its own accord over a few years. I forgot all about it until stiffness in one arm/leg 20 years later prompted tests, and it turned out to be Parkinson's.

My neurologist said the CFS was actually the early symptom of it, and it's a fairly common first sign [IMPORTANT CAVEAT: I'm not implying AT ALL that it's common for CFS to be an indicator of eventual Parkinson's; it's a rare disease and extremely rare in under 50s, so the CFS is MUCH more likely to have another cause; just in those who are diagnosed with Parkinson's or similar, it often turns out they had CFS-like symptoms first, sometimes years before other symptoms].

GPs don't tend to make this association as there are so many more common/easily treatable reasons for CFS, and this is hopefully, and most likely, the case for you. I'm just mentioning my story (without I hope causing any alarm), as your GPs don't sound overly helpful, so may not have asked whether you have any symptoms seemingly unrelated to CFS, like limb stiffness or tremor, handwriting getting smaller, sense of smell decreasing etc, to rule those things out.

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by KarolinaW » Thu Feb 23, 2017 9:36 am

Hello Margot,

I saw an endocrinologist privately in Poland, it was just easier and faster to do that. I translated the results and took them to my GPs so that they do not question why I need to take levothyroxine. Before that they said they wouldn't start treatment because my TSH was within normal range.
Hopefully your GPs will be more understanding and can refer you to an endocrinologist.
All the best!

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by EBn » Wed Feb 22, 2017 9:31 pm

Hello

I went through a period of exhaustion that just didn't seem natural - as you describe.

I saw a nutritionist and she recommended blood tests. I was very vitamin d deficient and deficient in one particular mineral. The supplements combined with the diet plans have made me feel back to my normal self.

Do explore all of the options and seek more advice. Good Luck

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by Lily pomme » Wed Feb 22, 2017 11:46 am

Thanks so much Karolina , I think I could have the same thing as you

I know the thryoid 'normal' ange in the UK is very wide on purpose so they dont diagnose many people as it costs NHS a lot.

did you get a referral to endocrinologist easily on NHS, how long did you wait, and did you visit St georges or private doctor?

thanks!

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by KarolinaW » Tue Feb 21, 2017 11:56 pm

Hi Margot,

I had similar problems, constantly feeling tired, weight gain, puffy face. My GP tested me for various things, said that my thyroid was fine, but when I consulted endocrinologist it turned out that I had hypothyroidism (my TSH was 3.9 at that point) - GPs will normally start treating you when your TSH is 10 or above, but I know that doctors can't agree on the upper number, some say the new level should be 2.5 and some say it should stay at 4. I also had thyroid ultrasound scan done and it turned out that I am in the initial stage of Hashimoto's thyroiditis (autoimmune disease). I've been taking medicines for almost a year now and I do feel much better. Although your situation may be different, I thought I'd share my story, maybe you'll find it helpful. Good luck!

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by Deb » Tue Feb 21, 2017 1:19 pm

I can’t say I had a disease but in case you are still trying (like I was) to work out what is wrong, when you KNOW something is wrong, my story may help. In my teens I developed a little problem which I can only call excessive sleepiness, to the extent that I saw doctors about it over the years, who all tested me and told me that there was nothing clinically wrong with me. But there had to be - I literally couldn’t stay seated for more than about twenty minutes without falling asleep as if drugged. It started in high school, falling asleep in reading periods and it got worse by the time I was at university. I fell asleep in exams at both school and uni, and at uni I fell asleep in every lecture so I stopped going and just borrowed notes from friends or studied from my text books.
I couldn’t drive for more than twenty minutes without putting myself in serious danger. Clearly, I was also a terrible passenger, famous for being no help at all on a long distance trip!
Dinner parties around a table were a torture, by about 9pm I was dropping off, there had to be a lot of laughter and alcohol involved to keep me awake!
I gave up trying to watch movies or tv. Office meetings were seriously embarrassing. Afternoons at my desk were seriously tricky as not even a walk around or a coffee brought me out of it.
I was utterly powerless when it took me over. It was like those moments before you go under when you have a general anaesthetic, you know, when you are counting down and your mind and body are powering down and you are helpless against it. That’s what it felt like.
The doctors didn’t have any answers for me, the standard statement was ‘there is nothing clinically wrong with you’ and I was otherwise physically all right. During my ‘awake times’ I was doing quite a bit of varied sport so it wasn’t a lack of energy unless I had already slumped into sleepiness, at which point I couldn’t move from the sofa. Finally when I was about thirty years old I was living in Auckland for a period and I met a doctor, just socially, she wasn’t practising, but she persuaded me to start taking a very high quality pharmaceutical grade multi vitamin/mineral supplement. Not actually for my sleepiness, but my brother had passed away a couple of years earlier from cancer and I was very interested in antioxidants and cancer protection and these supplements had it all. Anyway, I started on the supplements, very diligently, and about three months later did a road trip from Wellington to Auckland in a day. It took 9 hours – and I stayed awake the whole way! The whole way!! It was so lovely to appreciate the scenery for once! And it was only then that I realised that my problem had been some nutritional deficiency, I’m still not sure what. But nobody I had seen had every asked me about my diet, or thought to send me to a nutritionist.
So my point is perhaps if you have time to try it, as it’s a pretty lightweight easy solution, and you’d know within 3 months…try a top notch pharmaceutical grade supplement and be religious about it. I’m no longer on supplements but I have vastly improved my diet which wasn’t actually all that bad back then anyway – I was always one of those whole grain, low fat people – perhaps what was missing was the fat as I am now a healthy fat lover, along with the whole grain. Who knows!
I’m now a practising health coach and one of the other things I have learned a lot about over the past couple of years is the vital role of your gut bacteria in your health AND mental wellbeing. Around 90% of the serotonin in your body is manufactured and stored in your gut. Medicines decimate your colony of good bacteria so taking drugs for mood seems to me to be counter intuitive. PM me if you want some links on how to look after your gut, there is some great info out there. And I can throw some yummy nutritive recipes your way if you’d like.
If I don’t hear from you, hope it all comes right!

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by Lily pomme » Tue Feb 21, 2017 1:15 pm

Yes Goldhawk, got all my thyroid done (TSh, t3, t4, reverse t3, TPO)

Im pretty sure its not due to my diet , which is very good and quite low in gluten,
(I have no Ibs/ digestive pbs) so I think a gluten intolerance is really unlikely

I tried having probiotics too but same..

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by mmb » Tue Feb 21, 2017 11:59 am

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.

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by Goldhawk » Mon Feb 20, 2017 9:01 pm

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

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by Mummyputney » Mon Feb 20, 2017 8:47 pm

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

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by Lily pomme » Mon Feb 20, 2017 2:35 pm

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...

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by Lily pomme » Mon Feb 20, 2017 2:31 pm

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 !

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by Marmot-in-london » Mon Feb 20, 2017 11:09 am

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

Re: Anyone has Chronic Fatigue Syndrome or similar? Help needed!

by chorister » Mon Feb 20, 2017 10:06 am

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.

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