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ME/CFS? Am at the end of my tether.

(34 Posts)
CuppaTeaAndAJammieDodger Sun 17-Jul-16 20:17:59

I have been back and forward to my GP for 2 years now with different things wrong; blood tests have come back inconclusive, scans have shown nothing and now I'm back with more strange things going on (more bloods to be taken tomorrow).

I am absolutely sick of feeling like shit and loathe going back to the doc with yet another thing wrong with me (I find myself apologising to her each time I go in) and find myself avoiding it until things get really bad.

I had a bit of a lightbulb moment the other night and wondered if I had ME/CFS. Of course nobody wants this but it really would be good to get some sort of diagnosis.

I was hoping/wondering if any of you could read my (extensive!) list of symptoms and let me know if you think it's plausible?:

•Persistent headaches that are not typical migraines (although do suffer from them as well occasionally which are treated with beta blockers) mainly behind the eyes and back of head – have been experiencing this for over a year
•Symptoms of IBS – chronic diarrhea, bloating – have been experiencing at the current level for approximately 6 months but has been there for a couple of years
•Noticeable deficit in short term memory, ability to focus/concentrate for the past 18 months or so
•Constant tinnitus in left ear for 2 years (MRI shows no abnormality)
•Regular heart palpitations (have been checked for heart problems and been given all clear)
•Recently started muscle twitches all over body, always there to greater or lesser extent
•Recently started unexplained pains all over body (come and go quickly – often within a couple of minutes)
•Recently started experiencing severe fatigue in arms – feel like two lead weights (one arm is often better than the other – but they swap)
•Unbelievable fatigue that can be there when I wake up or hits me out of the blue during the day –I could be fine and then could be literally crumple on to the floor within seconds, this isn’t every day but very regularly (I’d say the percentage of affected days is currently about 70%) – have been experiencing this for at least a year
•Get unwell (sore throats/flu/infections) more often than usual
•Occasional unexplained nausea/vomiting
•Anxiety and panic attacks (have managed to reduce the panic attacks with mindfulness)
•Get very cold very easily – e.g. husband and daughter can put on a jumper to counter the cold when I have to put on 5 layers and still feel the cold.
•Go through phases of insomnia and wanting to sleep all the time
•Very recently noticed a heightened sense of smell (N.B. I recently had a brain MRI that came back normal)

Thanks tonnes for getting this far!

froggers1 Sun 17-Jul-16 20:22:56

It sounds like it to me. I had it for six years but have been well for ten. I ended up going for a private health-care to rule stuff out. They diagnosed me. I took a list similar to yours. I feel embarrassed at the length of it...Hope you get a diagnosis soon x

CuppaTeaAndAJammieDodger Sun 17-Jul-16 21:13:30

thankyou froggers1 - so the things on your list were similar to my (many) ailments?

Dontyoulovecalpol Sun 17-Jul-16 21:17:34

I had CFS for a year (I was a lucky one where if just went away!) and the only symptoms from your list I had were the arms aching and the pain.

This isn't in any way a medically qualified view but I'm wondering whether you have something else which has then turned into a CFS like illness (maybe post viral fatigue?) I only mention that because the pain in arms and legs is the first sign I had, but yours seems quite recent after 2 years of symptoms?

All I would say though, is my GP did take it seriously although there was little actually done (a referral to rheumatology and pain relief) so maybe try a different GP or surgery, OR simply go back and demand a referral?

Dontyoulovecalpol Sun 17-Jul-16 21:19:36

Also another distinct symptom is I was never actually sleepy tired. I was just in so much pain I had to lay down. Fatigued is about right. I never slept deeply which was, at the time, a theory as to the cause of CFS- that you weren't entering a deep enough sleep to repair muscle damage.

CuppaTeaAndAJammieDodger Sun 17-Jul-16 21:27:06

thanks Dontyoulovecalpol - when i say fatigued I suppose I mean every ounce of energy has left my body and I can't hold it up anymore, rather than classic sleepiness.

Dapplegrey2 Sun 17-Jul-16 21:33:16

I was always cold and completely exhausted by lunchtime and I became extremely forgetful.
A severely under active thyroid was diagnosed and since I've been on thyroxine I've been fine.
Given your symptoms the doctor has probably tested you for that, but might it be worth having another test?

Dontyoulovecalpol Sun 17-Jul-16 21:39:28

That's exactly it cuppa
I think you should get thyroid tested too

CuppaTeaAndAJammieDodger Sun 17-Jul-16 21:40:31

I did have my thyroid checked about a year ago Dapplegrey2 and was expecting it to be the problem to be honest (runs in my mum's side of the family) but it was fine - probably time for it to be checked again.

BishopBrennansArse Sun 17-Jul-16 21:42:45

How are your vitamin d levels?

toothgenie Sun 17-Jul-16 21:44:01

Have your vitamin b12 levels been checked?

OhHolyFuck Sun 17-Jul-16 21:45:03

I'm another with suspected me/cfs but in the meantime they keep doing a million blood tests (iron and thyroid despite them constantly being normal 😒)

I have the fatigue, the insomnia/sleep for England/aching joints/palpitations/feeling cold too if that helps any

stareatthetvscreen Sun 17-Jul-16 21:45:38

can you work op?

live a normal active life?

barkingtreefrog Sun 17-Jul-16 21:54:30

cuppa I was diagnosed with ME and had it for 3 years, finally got rid of it with the lightning process (Google it if you haven't heard of it already, it's not for everyone but I had tried everything else).
At my worst I couldn't look after myself and had to move back in with my parents. I couldn't sit up, best I could do was lie propped up on the sofa. My concentration span was so poor I couldn't follow a conversation and my mum had to come into doctor's appointments with me because I'd walk out and forget everything that was said.
I had an overwhelming fatigue that was way beyond tired, but I couldn't sleep, just had cat naps during the day and lay awake for hours at night. I had nausea all the time, and dizziness if I sat or stood up. I had to be supported to walk, I couldn't get to the kitchen by myself and make a sandwich.
I made a slow recovery to an extent through pacing myself, but any extra effort to do something (eg attend a wedding) would set me back and leave me feeling a lot worse for days. I eventually returned to work for two days a week after over a year off, but I could only manage it because I did nothing other than work and rest.

I had other symptoms but those were the main ones, and the ones I can remember clearly 3 or 4 years on.
I wouldn't want to try and diagnose you, but hope it helps to compare with how you are feeling. Foggy Friends is a great forum for people with ME, you might be able to get some helpful info from there.
Good luck xx.

barkingtreefrog Sun 17-Jul-16 21:58:38

Oh, and just remembering another thing. The concentration span issue and fatigue extended to everything. I couldn't read a book, couldn't knit, couldn't spend more than 5 minutes on the internet without feeling worse, couldn't watch a TV programme that required actually following a plot.
It really does affect absolutely everything, it was an incredibly miserable time and I was on antidepressants through it all.

CuppaTeaAndAJammieDodger Sun 17-Jul-16 22:05:19

The doc is checking calcium levels alongside vitamin levels in tomorrow's blood test I believe - hoping she's thrown in thyroid too.

I work from home part time and have done for about a year now, but was working full time in an office before then (pretty senior and pressured job) and had to quit - partially due to the place (another story!) and partially due to health. These days it is often a struggle to get DD to school - we tried cycling recently and although initially felt good (say for 30 minutes) it then felt like I'd been hit by a steamroller, same with walking - I'm almost at a stop by the time I get to my road.

barkingtreefrog dear god I'm sorry you went through that. I empathise with many of the things you've been through (but to somewhat of a lesser extent so far) - completely get the pushing yourself to attend a social event and knocking yourself for 6 as a result. Thsnkyou for the forum suggestion, I will go and take a look.

Katymac Sun 17-Jul-16 22:08:37

Specifically ask for a Vit D test - they are often reluctant to do them

Longlost10 Sun 17-Jul-16 22:13:56

I had some of these symptoms from vitimin D deficiency. I needed prescribed supplements hundreds of times stronger than the over the counter ones. How much exercise do you take outside? How much of your skin is exposed to the sunlight every day? diet has no effect on me at all.

VoldysGoneMouldy Sun 17-Jul-16 22:14:18

If you've had all this going on for so long, with all negative testing, TBH I would go to the GP and ask to see an ME / Fibromyalgia specialist (the main difference between ME and Fibro is generally noted as all over pain, but the teams often function together). You have nothing to lose by asking.

ME works on a sliding scale; some people are so bad they are stuck in bed 24 hours a day, others manage to work whilst struggling through the symptoms. This is from the young people's charity website but is accurate for all cases. It's worth having a look at before speaking to your GP about it so you can say you've been doing you research.

However - I say this gently - a diagnosis isn't a cure. Sometimes when you're looking so hard for answers it's easy to focus your energy onto getting to that point, and not considering the emotional impact having a yes or no might have. Best of luck.

stareatthetvscreen Sun 17-Jul-16 22:26:41

hmmm hard to say isn't it?

how are your glands? swollen?

CuppaTeaAndAJammieDodger Sun 17-Jul-16 22:36:10

Not tonnes Longlost10 to be honest, I'm very pale so tend to shy away from the sun.

My glands are ok I think Stareatthetvscreen, although the glands in my groin quite often hurt and are palpable.

Thankyou Voldys I will speak to the doc and take a look at your link. I'm not entirely sure how I'll react to a diagnosis, but I'm so so tired of being in limbo.

stareatthetvscreen Sun 17-Jul-16 23:42:37

my lymph glands were and still are always up and down and tender so i would probably say no to ME/CFS

but in itself it tends to be a diagnosis only given when everything else has been excluded

good luck with feeling better and trying to get to the bottom of it all smile

CuppaTeaAndAJammieDodger Mon 18-Jul-16 07:20:21

Thanks stareatthetvscreen - hopefully we'll get to the bottom of it soon.

I've been on the foggy friends website and it seems raised lymph glands aren't always evident - but we'll see I guess.

The twitching is already sending me loopy this morning, hate waking up and wondering how crap I'll feel today.

RubySparks Mon 18-Jul-16 08:25:01

Sounds very similar to how I felt before being diagnosed hypothyroid and taking levothyroxine. I also have coeliac disease which was discovered first. I found pacing useful to manage symptoms and I am a lot better than I was. However I have severe pins and needles in feet and legs and still problems sleeping! I also had the stressful awful job which I left two years ago, now work 3 days in much more pleasant workplace! I think stress probably triggered problems for me and I haven't quite been able to get full health back. I also had low vitamin D and took supplements and B12 injections.

CuppaTeaAndAJammieDodger Mon 18-Jul-16 12:48:55

Checked with the nurse doing my blood test - thyroid is being checked, as well as calcium - but no vitamins, so I will push for that if these bloods come back normal.

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