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Autoimmune disease

ME/ cfs - is this relevant? Help please.

23 replies

notsurewhatshappening · 19/01/2019 09:59

I've got a GP appt next week to discuss blood tests and hopefully get a bit further working out what's going on. I think it's something autoimmune / ME /CFS.
Symptoms :
Exhaustion that used to be periodic but is now constant. Sleeping for 12 hours most nights and often napping/ resting during the day.
I work part time. After a work day I need a couple of days to recover. Feel very weak and flu like.
Achey limbs particularly a day or two after exercise (which I've limited drastically recently).
Blurred vision when I'm really tired.
Itchy, crawling, tingling, burning sensations under my skin. The burning isn't all the time but the itchubg/ tingling is constant.
Last night I went to bed at 7pm as normal. The heating was on and read 21 degrees but I needed pyjamas, dressing gown and a full on sleeping bag under my duvet to feel warm enough.
Which of these should I mention to the GP? What will happen next?

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redyawn · 19/01/2019 10:10

Mention it all to your GP. You need to give the GP as full a picture as possible. Good luck.

notsurewhatshappening · 19/01/2019 10:11

Thank you, I will.

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Utterlyexhausted · 20/01/2019 06:37

Hi! If I were you I’d demand a ferritin test to check your iron stores & all your thyroid labs if they’ll do it..I was in the exact same situation as you & found my ferritin was extremely low after demanding a full iron panel done even though I complained of the same issues you have. It seems that ferritin isn’t routinely checked (although it should) & is easily missed. Mine was v low but corrected with iron tabs x 3 daily + vit c. Xx

LifeBeginsNow · 20/01/2019 06:56

Also, ask for a double appointment as it sounds as though you've got a few things to work through and some doctors will only discuss one symptom at a time (even if they relate to each other).

PetuliaBlavatsky · 20/01/2019 06:59

Make sure you ask for b12 levels to be checked (they are not part of a routine blood test). B12 deficiency can produce all the symptoms you are experiencing

redyawn · 20/01/2019 07:45

I has ferritin and b12 checked a few weeks ago without asking. I told the GP my symptoms and he selected a list of blood tests including those.

notsurewhatshappening · 20/01/2019 10:22

Last night I went to bed at 7pm. DS was sick at 12pm so I dealt with that and went back to sleep. Just woke at 10am! This is not normal.
Bloods have already been done. Can I ask for a print out? There are doctors in my family so if any are borderline they would be able to check for me.

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notsurewhatshappening · 20/01/2019 10:23

Argh I meant 12 am.
14 hours' sleep!

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AltogetherAndrews · 20/01/2019 10:28

Cfs is a diagnosis of exclusion, they will only give it when everything else has been ruled out. In my experience it’s code for “something is wrong, but we haven’t a clue what.”

All of your symptoms could be cfs, the thing that stands out for me is you talk about exercise. People with cfs often have post exertional malaise, that is that after any exercise, the body goes into collapse, typically 24 to 48 hours later. If you are managing to exercise cfs seems unlikely. The other thing, the quality of sleep with cfs is usually very poor, and does not make you feel rested.

Keep going to the gp, and explore every avenue.

PetuliaBlavatsky · 20/01/2019 11:17

You can ask for a printout, yes. Some practices charge for this but I think there's a maximum (£10?) that they are allowed to charge. My GP practice uses patient access online so I can look at all my test results and ranges once I'm logged in.

Floofsquidge · 20/01/2019 12:38

Altogether is right, CFS /ME are only diagnosed after exclusion of all else and certainly wouldn't diagnose after just one blood test or an iron levels test unless the gp is incompetent.
When I was first diagnosed in my late teens I could hardly move and had every test under the sun over several months in & out of hospital and caused untold stress to my mum in the process.
I'd also look into fibromyalgia, as symptoms can be similar.

notsurewhatshappening · 20/01/2019 12:53

I've had the symptoms for 18 months and have been to the same GP a few times. Bloods have always been normal. Recently it has become much worse as in, I have no good days anymore, the fatigue is all the time. The last time I exercised I felt very unwell for 2 days after. I don't exercise any more.
Sorry for unclear posts... brain fog.

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HappyKatieA · 20/01/2019 13:30

I was diagnosed with CFS/me this year (I think I've had it on and off since I had glandular fever in my teens, but the attack I had last year felt more severe than ever before), after having many many tests and being referred to the CFS clinic.
I hope your appointment goes well, try taking a list as the brain fog seems to kick in with me when I need to remember things.

theresaspiderinthesink · 21/01/2019 12:00

What are your lungs like?

You describe my symptoms to a tea a few years ago. I never got a full answer but i think I got there via a combo of different things.

The itching I recognise. Boosting ferritin was suggested and helped a bit. (Over 70). I'm hypothyroid but was on a good dose of thyroxine.

The only other part of the puzzle that started to help me recover was I had mild undiagnosed asthma. Pregnancy completely sorted me out. I did wonder if it was cfs/ me it's just I had so many other things going on. Epsom salts sometimes helped the itching.

But I wasn't sleeping well plus had small child so I do wonder if lack of sleep was also a factor.

theresaspiderinthesink · 21/01/2019 12:01

Pregnancy didn't sure the asthma; that's got worse but I'm in better inhalers now which have made a huge difference.

notsurewhatshappening · 21/01/2019 18:44

GP was very sympathetic and talked me through the bloods. I didn't need them on a print out as they are all bang on average normal range (saw them on the screen). On paper I'm incredibly healthy. GP is referring me to an endocrinologist and suspects ME / CFS but needs to go through the process of ruling out. Thank you for all replies- feel like I got somewhere today.

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notsurewhatshappening · 21/01/2019 18:48

I use an inhaler when I have a chest infection but very rarely. Interesting @theresaspiderinthesink

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theresaspiderinthesink · 21/01/2019 20:31

Why do you use an inhaler? Have you been diagnosed with asthma?

notsurewhatshappening · 21/01/2019 20:35

I had an inhaler as a child then didn't need one for 24 years... 2 months ago I had viral induced wheeze and was prescribed a blue inhaler but I haven't needed it for the last 6 weeks

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theresaspiderinthesink · 21/01/2019 21:01

Ok - it might be worth asking them to rule out asthma that's slipping under the radar. Not all asthmatics wheeze - I very very rarely do. Coughs though, drag on and on. I think you'd know, but I did normalise my symptoms and had no idea they were symptoms till they worsened considerably after my first pregnancy. But still it wasn't clear till a course of steroids sorted a bad cough out, it returned as soon as I'd finish them. Asthma can start in adult hood or return apparently.

The asthma nurse (I asked to see) tested peak flow before and after using the blue inhaler and it was enough of a difference to be asthma- but it's obviously treated with steroid inhalers.

I'm on a new long acting reliever and steroid combo and the difference in energy is unbelievable. I'm hypermobile and so keeping strong is really important. I couldn't do as much exercise / anything when my lungs weren't as good as now so a lot of my fatigue was simply being unconditioned, I was in a lot of pain with pelvic girdle pain too but couldn't get on top of effectively, couldn't sleep well etc. Issues with thyroid medication. Viscous circle.

But that's just my experience, though a couple of mns I've spoken to had cfs type symptoms before they were diagnosed too. I saw an endocrinologist who tested me for addisons. So they may look at that.

I really hope you get some answers soon. Thanks

KinkyDoritowithsparkleson · 02/02/2019 08:55

CFS and fibro - your symptoms sound like me at my worst. Two things have helped a bit - cutting gluten stopped brain fog and headaches, also my vitamin d wasn't as good as it should have been. When this drops low, I am ridiculously unwell. I always find it much worse in winter. I hope you get some answers and find what works for you.

notsurewhatshappening · 02/02/2019 12:11

Thanks. I have really struggled at work this week and made a lot of mistakes. I've decided to take 2 weeks off as I'm not fit for my job currently. Will see the GP for a sick note this week. Mental health isn't great either as I'm not doing any social activities or spending any time doing nice things with my children, just sitting with them at home doing quiet stuff. Feel very frustrated and upset today. I'm so cold I'm in my sleeping bag under the duvet. Looking back I've been ill for a long time.

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notsurewhatshappening · 04/02/2019 17:04

Success today- got a private appointment with an endocrinologist. Much quicker than nhs referral. Am also signed off work so I can rest and sleep all day. Not as fun as it sounds but a relief

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