Could this be Chronic Fatigue Syndrome?

[clairethewitch70]

I see my GP every two weeks routinely (his idea not mine). He has mentioned CFS in passing when discussing my health, but I always thought no, as I was functioning more at the time.

Now I am slumped over my laptop, no energy to even go to the toilet or eat, gradually getting worse over the past weeks. Difficult to walk, legs like jelly, hold wall getting from room to room, just want my bed.

Current diagnosis' include fibromyalgia, BPD, Hashi's, vit d deficiency, psychotic depression, spinal stenosis, multiple tendenopathy and arthritis in various sites. Last week minor surgery to remove a suspicious mole on shoulder blade.

I am so worn out. Work from home but getting nothing done lately. PIP home assessment next week (was on lifetime DLA).

[MissWilmottsGhost]

sounds awful OP. How long have you been like this?

As I understand it, CFS is a diagnosis of exclusion. So if they can't find anything else wrong then it is the only thing left.

I have chronic fatigue but I don't have CFS, I have an autoimmune disease. Took years to get diagnosed and then it was only found by accident while investigating a gynaecological symptom

[clairethewitch70]

MissW thanks, I haven't been well since I was 25 - 46 now. The fatigue has crept up on me more since about Jan-Feb. I was diagnosed with SLE at one point, put on steroids, felt marvellous, transferred onto Plaquenil. After several years they said I no longer had anti-bodies so it wasn't lupus and took me off the Plaquanil.

[LivingInMidnight]

I would have thought it likely to be fatigue related to your other diagnoses. Fibromyalgia comes with crushing fatigue on its own!

[Mrsmartell08]

I hear you!
I'm in the middle of a cfs or fibro glare up
Feel ghastly
Dr has changed my meds but I foresee an ENT referral soon :(
Anyone else got chronic sore throat and glands??

[Mrsmartell08]

I was also a ? Lupus dx but never on meds
I'm on nortriptyline atm
And painkillers
And PPIs
And hrt!

[clairethewitch70]

Living that is what I initially thought, the fatigue is certainly crushing at the moment
MrsM no sore throat now but I do get random sore throats that just last a few hours then go. Nortriptylline/amitryptilline just spaced me out, reacted with my pain killers. What pain meds are you on?

[Mrsmartell08]

Paracetamol
Cocodamol
I can't take nsaids sadly
I have nefapam which is great but very strong
My Drs just don't seem to know what's wrong with me :(

[clairethewitch70]

MrsM I am not familiar with Nefapam, is it an opioid? I have been on Oxycontin & Oxynorm for over 10 years and just recently added in 30mg codeine and parcetamol. Just about managing the pain, but the fatigue is so unrelenting.

[Mrsmartell08]

It is yes
It's good but wipes me out...i use it rarely

[katymac]

I was told that CFS & F were at different ends of the spectrum with CFS displaying more tiredness (ridiculous word for the shattered feeling) & FM displaying more pain

I am diagosed with both (alongside IBS, Hypermobility, Vit D def, B12 def) but since supplementing with B12, Zinc, Vit D, Iron, Methyl folate, Magnesium, Vit K I am starting to get my life back together

GP thinks it's a placebo - I'm cool with that atm as it is working!

[Mrsmartell08]

I've been dx with both too
I am vit d deficient
I should take a supplement but rarely remember (brain fog!!)
I also have some magnesium somewhere...i need to take them again
I will rattle at this rate!
Dr wants an ENT referral if throat no better next time I go which is worrying me

[Okite]

How's your B12? Pernicious anaemia is an autoimmune disease which destroys your ability to absorb B12 and deficiency can leave you cripplingly tired with nimbleness, brain fog, confusion etc. As you already have a couple of autoimmune conditions, you are more likely to get more. Worth checking- the level that is regarded as ok in this country varies wildly and can be very low, but the PA society reckon anything under 500 needs to be treated.

[Groovee]

I have fibromyalgia and since 2015 have been having iron issues. I have overwhelming tiredness which just floors me.

[LivingInMidnight]

The high temperatures have really messed me up, wonder if that could be playing a part. Supplements don't help me, unfortunately (although I take them anyway).

I honestly think the doctor you see plays a big part in whether you get a diagnosis of CFS or fibromyalgia.

[Mrsmartell08]

God yes
The past week has been horrendous

[katymac]

Recurrent throat infections/toncillitis & mouth Ulcers for decades

All cleared up now

A lot of supplements can't be digested as often AI illnesses go hand in hand with IBS

Which is also in remission

[Mrsmartell08]

Katy...how did your throat once tions manifest?
Sorry to ask but Dr has scared me a bit re ent referral

[Mrsmartell08]

I've had one for weeks now.....

[clairethewitch70]

katy yes I was told that too and at the time the pain was more predominant

okite My maternal aunt had Pernicious Anaemia and had to have regular B12 injections. All the women on DM's side have an autoimmune illness, mine is Hashi's. I was tested for B12 years ago as also I am a Vegetarian and was told I had 2 years reserves. Will ask for it to be retested, thank you.


Grovee can they tell Iron levels from Full Blood Counts? My white cell count is always high but red is fine.

Living this weather is draining me too.

for you all

[Groovee]

I think they can. Sometimes it's worth asking your ferritin levels.

[katymac]

I had mumps, measles, German Measles, chicken pox, whooping cough & scarletina all within about 18m/2 yrs around 4

I was often off school for weeks/months with toncillitis - i finally had the out when I was 21 and the infections continued - I have a large, empty gland in my neck like a deflated balloon that still fills up occasionally (or at least it did before this latest drug regime) I also had mouth ulcres that became infected and drained into the gland

I reg. got swollen glands (all over my body mainly neck & armpit, occ under ribs and groin)

I remember a holiday in france when a child we were on holiday with us had the french GP in to see her awful toncils & gave her antibiotics and looked at mine & tried to hospitalise me - my view was it was just another sorethroat not even a bad one

I was tested many many times for glandular fever then diagnosed with CFS in my early 20s

I find tablets never digested and it was only with proper supplementation that my ibs reduced enough to cope with more normal vitamins

[Mrsmartell08]

Oh katy :( you poor soul
I had whoopobg cough at 18m
I had glandular fever at 18
Dx with me at 22
It sucks

[katymac]

The thing is, that for me at least, it was in all likelihood none of these things

I have an absorbtion issue and everything is out of kilter - started with Zinc, B12 & D and things started to get better - somethings make no difference (eg dairy free but calcium didn't help at all so I don't take it) others are life changing (methyl folate)

I got fed up with the GP telling me I was depressed when I was ill

[clairethewitch70]

katy

[Okite]

claire in light of your family history of pernicious anaemia as well then, I'd get that tested urgently. One issue with having 'stores' in your liver (which incidentally isn't tested, only serum levels) is that if you have PA, the cells you need to absorb B12 through your gut wall are destroyed. Once the B12 stored in your liver is released into your gut....nothing happens because you still can't absorb it! B12 stores are fairly meaningless for PA sufferers, regular jabs are what is needed.