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Chronic fatigue / fibromyalgia / adrenal fatigue.... Or??

26 replies

AnythingForAQuietLife · 15/06/2018 13:15

Dear Mumsnetters

I apologize because I don't come on here very often and when I do I'm simply asking for help or advice. I know that's a bit rubbish and I'll change that.

This is quite a long post but I'm desperately worried about my husband. NHS tests are drawing a blank and we're not quite sure what to do next. I'm hoping someone can offer a bit of constructive advice. We're pro science (doctors) but are happy to try anything alternative (within reason). We're pro NHS but have put aside a bit of money to try a private specialist. Any help or ideas would be most grateful received. Here's the detail...

In January this year he began showing signs of ME / chronic fatigue and / or adrenal fatigue and / or fibromyalgia. His symptoms however were building from last summer (incidentally a period of extreme stress and him working crazy ridiculous hours). But his symptoms became really acute in January.

Essentially he's lost all his energy. In January he was suffering terrible terrible pains in his body. Now these are more like muscle aches. This is combined with a really weird feeling in his body of having "jitters" the whole time. Like his body never ever settles down.

Since last summer he feels like he's been 'slowing down', feeling increasingly tired.

But by mid January it felt like his body suddenly said "enough" and the symptoms became really bad. Crazy fatigue that would come out of nowhere and he literally needed to go to bed - but then very bad sleep where he doesn't sleep for long.

He also had incredibly painful (muscle) aches that came and went fluctuating from lower body to upper. Some days he couldn’t get up. He would feel cold "right inside me" - but with a very high body temperature.

His immune system became very low. Whereas before he'd fight off / not get colds, he began catching every bug going.

He felt restless, very very jittery at times. Panic attacks. Pumping adrenaline. This has remained. He feels constantly on edge. Like there's something pumping or rushing through his blood.

GP blood tests came up with nothing - except an extremely low vitamin D level (he received a prescription for pharmacy grade vit D which he’s still on). The GP suggested fibromyalgia but stopped short of diagnosing it.

He was once told (around ten years ago) by a bio resonance style practitioner (who also did blood tests) that his adrenal glands were completely shot to pieces. So we’re very aware of the possibility of adrenal fatigue.

Since mid Feb he’s been on the following, religiously:

Vit B complex

B12

COQ10

a v good probiotic

Vitamin D

Adrenal Cortex

‘Cell Food’

Super greens (Kiki brand)

Zinc

And for a while he also additionally took:

Takuna

Sizzling Minerals

Flax Seed

Plus lots of water.

It took a good two months but then he slowly began to improve. I’d say that by mid April he began to smile again and things felt sort of normal but not 100%. Then it all started again in May.

As an aside: last year he was having terrible, really bad palpitations - like almost every night. One night it was so bad I took him to A and E and they checked him over. Everything seemed ok. He was referred to a specialist and again, nothing serious found.

He doesn't smoke (he used to, in his 20s, though last year suddenly began having the odd one through stress, which shocked me). He's not really a drinker. He's never used recreational drugs.

Does this sound familiar to anyone? Does anyone have any advice or even thoughts on what it might be? This may be a crazy question to ask on the internet but should I be worried? Professor Google can occasionally frighten the life out of me but now I'm trying to be honest and accept every possiblity whilst remembering that two sets of bloods have come back clear. Any specialists that anyone can recommend?

Thank you so much in advance.

OP posts:
AnythingForAQuietLife · 15/06/2018 13:15

Dear Mumsnetters

I apologize because I don't come on here very often and when I do I'm simply asking for help or advice. I know that's a bit rubbish and I'll change that.

This is quite a long post but I'm desperately worried about my husband. NHS tests are drawing a blank and we're not quite sure what to do next. I'm hoping someone can offer a bit of constructive advice. We're pro science (doctors) but are happy to try anything alternative (within reason). We're pro NHS but have put aside a bit of money to try a private specialist. Any help or ideas would be most grateful received. Here's the detail...

In January this year he began showing signs of ME / chronic fatigue and / or adrenal fatigue and / or fibromyalgia. His symptoms however were building from last summer (incidentally a period of extreme stress and him working crazy ridiculous hours). But his symptoms became really acute in January.

Essentially he's lost all his energy. In January he was suffering terrible terrible pains in his body. Now these are more like muscle aches. This is combined with a really weird feeling in his body of having "jitters" the whole time. Like his body never ever settles down.

Since last summer he feels like he's been 'slowing down', feeling increasingly tired.

But by mid January it felt like his body suddenly said "enough" and the symptoms became really bad. Crazy fatigue that would come out of nowhere and he literally needed to go to bed - but then very bad sleep where he doesn't sleep for long.

He also had incredibly painful (muscle) aches that came and went fluctuating from lower body to upper. Some days he couldn’t get up. He would feel cold "right inside me" - but with a very high body temperature.

His immune system became very low. Whereas before he'd fight off / not get colds, he began catching every bug going.

He felt restless, very very jittery at times. Panic attacks. Pumping adrenaline. This has remained. He feels constantly on edge. Like there's something pumping or rushing through his blood.

GP blood tests came up with nothing - except an extremely low vitamin D level (he received a prescription for pharmacy grade vit D which he’s still on). The GP suggested fibromyalgia but stopped short of diagnosing it.

He was once told (around ten years ago) by a bio resonance style practitioner (who also did blood tests) that his adrenal glands were completely shot to pieces. So we’re very aware of the possibility of adrenal fatigue.

Since mid Feb he’s been on the following, religiously:

Vit B complex

B12

COQ10

a v good probiotic

Vitamin D

Adrenal Cortex

‘Cell Food’

Super greens (Kiki brand)

Zinc

And for a while he also additionally took:

Takuna

Sizzling Minerals

Flax Seed

Plus lots of water.

It took a good two months but then he slowly began to improve. I’d say that by mid April he began to smile again and things felt sort of normal but not 100%. Then it all started again in May.

As an aside: last year he was having terrible, really bad palpitations - like almost every night. One night it was so bad I took him to A and E and they checked him over. Everything seemed ok. He was referred to a specialist and again, nothing serious found.

He doesn't smoke (he used to, in his 20s, though last year suddenly began having the odd one through stress, which shocked me). He's not really a drinker. He's never used recreational drugs.

Does this sound familiar to anyone? Does anyone have any advice or even thoughts on what it might be? This may be a crazy question to ask on the internet but should I be worried? Professor Google can occasionally frighten the life out of me but now I'm trying to be honest and accept every possiblity whilst remembering that two sets of bloods have come back clear. Any specialists that anyone can recommend?

Thank you so much in advance.

OP posts:
AnythingForAQuietLife · 15/06/2018 13:16

Apologies I think I posted this twice by accident.

OP posts:
Ridingthegravytrain · 15/06/2018 13:20

Maybe ask for acth stimulation test to check for Addison’s?

My symptoms are very similar to your husbands but I have hEDS and pots

Dodie66 · 15/06/2018 13:23

Has he had any proper adrenal tests done? My hubby has chronic fatigue and had to go to the hospital and have some tests. They injected cortisone and then did some measurements. He thinks it was bloods tests but can’t remember exactly. I think he needs a proper test for that. Hubby did pay years ago to see a specialist who diagnosed him with M.E. Might be worth going private. Y9u do get longer consultations etc.

SinkGirl · 15/06/2018 13:28

You could literally be describing me. It’s kind of uncanny. I have the very low vit D too, the pain, the palpitations, the fatigue and diagnoses of ME and fibromyalgia

Have they checked his thyroid? They often don’t in men but this in particular stands out
Since last summer he feels like he's been 'slowing down', feeling increasingly tired.

If his symptoms are up and down it could be Hashimotos. He needs thyroid testing to include TPO and TGAB antibodies. You can do this privately for not much money via a finger prick - I use medichecks but there are many other companies.

My thyroid levels are bouncing around all over the place but not enough for treatment yet.

SinkGirl · 15/06/2018 13:30

Also things like super greens may include iodine? If so, stop those - if it is his thyroid they could be exacerbating the issue and may affect test results. In fact I would stop everything for at least a few days before testing, ideally a week. Especially biotin if he’s taking any.

User10382454334 · 15/06/2018 13:31

I'm truly sorry your husband is not well, but with respect, please can you stop talking about adrenal fatigue, which has absolutely no backing in science. To all of us who live with Addison's disease, the pseudoscience and media attention surrounding so called 'adrenal fatigue' can be extremely irritating. If his adrenals were shot to pieces, he'd be dead. By all means get an ACTH stim test to check for Addison's; his sodium would likely also be very low and potassium running high if this was the case. I hope you get some answers soon.

User10382454334 · 15/06/2018 13:34

Also, I know you say the tests 'only' showed up extremely low vitamin D, but I have known people to suffer terribly with fatigue and muscle aches from low vit d levels. Perhaps it is just that? Has he had a blood test recently to see if his levels have improved with the supplementation?

AnythingForAQuietLife · 15/06/2018 13:56

Thank you for the answers so far. I'm in and out of WiFi today (annoying) but am going to read through a bit later. All answers gratefully received along with any more to follow.....

OP posts:
AnythingForAQuietLife · 15/06/2018 14:01

Grabbing two minutes...
@sinkgirl so do you have a diagnosis (of fybromalgia or CFS?)
@user103 Apologies, I don't mean to offend
@ridingthegravytrain Also apologies... What is hEDS and pots?

OP posts:
SinkGirl · 15/06/2018 16:29

I was diagnosed with ME in 2007, and my GP diagnosed me with fibromyalgia last year but I don’t believe I have fibro. Rheumatology cancelled my referral because my GP had already “diagnosed” me with fibro so there was no point. It’s nonsense.

SinkGirl · 15/06/2018 16:31

Also, how much vit D is he on? If he’s deficient, a normal dose isn’t enough - he needs a loading dose, look up the NICE guidelines x

swingofthings · 15/06/2018 17:25

It's sounds extremely familiar indeed, and it although I was convinced that something was very wrong with me, I can now look back and see that it was all down to stress, pressure and working long hours. I thought I was coping, but it built up and built up until it came out via various physical symptoms.

I started to get better when I left the job and started a new one, but it's taken almost 6 months and even then I'm not back to what I used to.

9amTrain · 15/06/2018 17:26

Can you get copies of his bloods and post them here? Often they say normal but are definitely not normal... and they may have missed testing something, in fact they often do.

Ridingthegravytrain · 15/06/2018 17:45

It’s hypermobile ehlers danlos syndrome and postural tachycardia syndrome

Ridingthegravytrain · 15/06/2018 17:46

Also in Addison’s it’s worth the acth stim if you can get it even if electrolytes are normal. My dog has atypical Addison’s and it was hard to get the diagnosis as his sodium and potassium were always fine

AnythingForAQuietLife · 15/06/2018 18:57

I just wanted to say thanks for all these answers which I'll be able to read properly a bit later (am still on the road)....

OP posts:
AnythingForAQuietLife · 16/06/2018 07:26

@9amtrain I'll do that though am not at home for another ten days or so. Thank you.

OP posts:
Ellapaella · 16/06/2018 13:06

Has he had 24 he urine catecholamines tested? It's a test where you collect your urine in bottles for 24 hrs and it is then sent off for testing. Your GP can arrange it.

AnythingForAQuietLife · 16/06/2018 14:50

@ellapaella no he hasn't... thank you

OP posts:
Singlenotsingle · 16/06/2018 15:08

Maybe polymyalgia? It's very painful, strikes the muscles, arms, shoulders, buttocks, thighs. When I first got it I literally couldn't get out of bed in the morning! You get tired, fall asleep during the day especially the afternoon. It tends to strike the over 50's, women more than men but men can be affected.

It can be controlled so not as bad as fibromyalgia.

binkybub · 16/06/2018 15:14

Same type of history. I have Lupus and POTS.
Try a sit/stand test.

Walkingthroughawall · 16/06/2018 15:53

If his adrenals were ' shot to pieces' 10 yrs ago he'd be dead by now.
Vit D deficiency can make you feel crap.
There is nothing in what you've posted that suggests urinary catecholamine need testing.
His body's probably knackered from trying to excrete all the woo supplements he's on!

woosey35 · 17/06/2018 23:09

Can you simply ask for a cortisol level to be checked?? My daughter has secondary Addison’s. Her sodium is normal. It’s her cortisol that’s dangerously low, in fact almost non existent. She gets all the symptoms you describe.
It’s only a blood test. Ask for it to be done. It will rule in or out his adrenals

UndomesticHousewife · 21/06/2018 13:13

Was he taking any supplements before the blood tests?