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To think I may have this condition?

(32 Posts)
Ijustwantedafringe36 Thu 18-Jun-20 19:15:51

When I was around three years old I fell ill to glandular fever,
from my knowledge this is common in babies etc but from what my mother tells me it was quite severe, I nearly died but I don't talk about it as I feel like it's quite misunderstood.

However I've been doing some research and I came across something called 'chronic fatigue syndrome' It's apparently a controversial diagnosis, may or may not be real but it's supposedly common in people who had glandular fever as a child.

My symptoms match, I have basically everything:
I get dizzy when I stand or sit up and the room spins, I have certain points in my body that ache a lot (knees, upper spine and upper area of arms) yet there's never any redness and I can never really tell if the pain is in my muscles or bones etc, I get brain fog often and my short term memory is terrible, if somebody asked what happened yesterday my mind would stop working. I can't walk long distances without getting the most horrible aches and fatigue. I never seem to not be tired and washing my face with cold water etc does nothing.
It seems to come in cycles too, with bad days and days where there's almost no pain at all.

I've always put this off as everybody feeling like this but I can't put the idea away.
Aibu to think this could be a possibility? Shall I book an appointment with GP when this all gets better?
Does anybody here have an official diagnosis of the condition and could give advice?

Thank you. flowers

OP’s posts: |
macaronilemonpony Thu 18-Jun-20 19:20:11

Go see the GP

WiddlinDiddlin Thu 18-Jun-20 19:23:25

To be honest, whilst there will be people with a dx of this, whether they actually have it is really not certain.

The symptoms of CFS/Fibromyalgia/lots of other things are many and varied, confused with the symptoms of thyroid issues and other not well understood conditions.

While it is tempting to think that having an official dx will get you better treatment, will help.. the chances are it won't as whilst some drs won't believe any of it exists, others will happily slap you with a dx, when in fact it's something else and then no ones going to investigate further.

Even those of us with an official dx (I have one for Fibromyalgia) still get treated like crap and as if we are making it up by some folk, including some health care professionals.

I would go and see your GP yes, but I'd be getting them to investigate and treat the symptoms and not pushing for a dx of CFS, no.

HollowTalk Thu 18-Jun-20 19:23:50

I always thought chronic fatigue could follow glandular fever, but this is decades later, I assume? What were you like as a teenager and young adult?

Ijustwantedafringe36 Thu 18-Jun-20 19:26:00

I've had it for as long as I can remember but seemed to start when I was around 13.
The thyroid issues sound interesting as I know that my grandmother passed away from thyroid cancer! shock

OP’s posts: |
cravingpistachiocake Thu 18-Jun-20 19:29:11

I’d agree - if you’re troubled by these symptoms go to the GP for a checkup in case there’s a cause like thyroid problems or something else easily treatable. It would be unusual if you’ve have the symptoms for many years though I suspect.

Depression and other mental health issues can cause tiredness, memory problems and even physical pain.

swishswashswoosh Thu 18-Jun-20 19:32:00

Have a look at the Action for M.E website. They have so much info on there about ME and different similar conditions like CFS, PMR and fibromyalgia. Get some info and go and see your GP. If your GP doesn't listen, find one in your practice or switch practices to one where there is one with a special interest in it. There may not be a treatment, maybe not a cure but management strategies to allow you to live your life.

LadyFeliciaMontague Thu 18-Jun-20 19:33:43

I do have CFS and fibromyalgia.

You would have to have blood tests to rule out other conditions, such as vitamin D deficiency, B12/folate deficiency, Hypothyroidism, low iron, coeliac disease etc most of which can give a lot of the same symptoms and are easily treated, and you have to have been suffering fatigue for several months before any condition of CFS will be considered. It actually took me 3 years and multiple trips to the Dr before finally getting a referral for diagnosis, the waiting list for that was a further 5 months in my area.

I would phone the dr now and describe the symptoms, don’t mention CFS they will eye roll, let them suggest blood tests and ask them what they will request. If they miss any from the list ask them to include it.

FBC
Thyroid function
Ferritin
B12/folate
Vitamin D
Coeliac

They may even request routing liver/kidney function.
Getting a diagnosis isn’t actually any help at all tbh. Plenty of people don’t believe it exists, even Drs.

DutifulDaughterWifeMother Thu 18-Jun-20 19:34:13

Hi, I have fibromyalgia and suspect I might have cfs. In the first instance get your gp to refer you to a rheumatologist who will be able to give you the correct diagnosis and support. If you need some support I am here for you. Take care x

TooSadToSay Thu 18-Jun-20 19:36:36

Of course it's real. I'm sorry that you're having these problems. Agree it's good to go to the GP. As CFS is kind of a diagnosis of exclusion it's well worth getting full tests - vitamins, iron, thyroid function etc. as those things can cause similar symptoms. Do also consider Ehlers-Danlos Syndrome and POTS. You might like this CFS blog.

Discoballs Thu 18-Jun-20 19:38:49

Sounds similar to I felt when I had a chronic vitamin B12 deficiency. They can go undiagnosed for years.

Ijustwantedafringe36 Thu 18-Jun-20 19:39:20

Thank you for the lovely advice. Will take a look at the website and consider calling later on/in a few days as I want to do my research first. smile

I've seen some of the other conditions and a lot of what I have seems to match up with a lot of them all together and it confuses me a lot. Is it possible to have a few at the same time? God. What is wrong with my body sad

OP’s posts: |
barcodescanner Thu 18-Jun-20 19:45:37

Add to the blood list above
Rheumatoid factor
ESR
C Reactive protein

Get a print out of the results so you can look at them yourself. Sometimes you can just be in range but it will be marked 'normal'
Don't be fobbed off. Some things (b12 for me) can be hard to be taken seriously and therefore get adequate treatment

BubblyBarbara Thu 18-Jun-20 19:49:38

All those systems could be a B12 deficiency. Annoyingly this doesn’t necessarily show up on the basic test.

Ijustwantedafringe36 Thu 18-Jun-20 19:52:58

I really don't think it's a deficiency, I've already tried to fix whatever I have with diet - I've tried a lot of things, going vegan, paleo diet, keto , mediterranean diet at the moment. Doesn't make any sort of difference however some (Veganism) Made it worse confused

OP’s posts: |
IKEA888 Thu 18-Jun-20 19:54:46

sounds autoimmune for sure.
have a look at POTS .
or autonomic dysfunction

Crimeismymiddlename Thu 18-Jun-20 19:59:55

Definitely get your thyroid checked. I felt the same as you did for years and it turns out I have an over active thyroid-so easy to treat but very dangerous if ignored-I thought i felt like shit because I was fat and stressed!

Dramalady52 Thu 18-Jun-20 20:05:56

B12 deficiency isn't always down to diet, although vegans and vegetarians must make sure they get plenty. It is down to malabsorption by your intestines due to lack of intrinsic factor. I eat loads of red meat and dairy but still have the deficiency. Either way, definitely get all those blood tests done.

mommymooo Thu 18-Jun-20 20:10:41

I felt like this for a very long time. Then I finally found a gp that listened he sent for some tests and scans. I have since they found a brain aneurysm which I've had clipped that was an incidental finding.
And a proper diagnosis for
Fibromyalgia. Chronic pain and fatigue syndrome. And Addison's disease.
Get your gp to get you seen by an
Endocrinologist XX

Lamazey Thu 18-Jun-20 20:29:21

Have you checked your blood pressure? Mine is very low and it can cause brain fog, tiredness, headaches and dizzyness. I also went to the GP with joint pain and a blood test showed I had a vitamin D deficiency. I do find I feel a lot better if I take a multi vitamin with iron regularly, if I stop taking it I can feel my energy dropping after a couple of weeks. Hope you find a solution soon, definitely see your GP, they should at least offer you a blood test (covid depending) x

CaffiSaliMali Thu 18-Jun-20 21:07:35

I have similar symptoms with a Fibro diagnosis. Unfortunately it's one of those diagnoses where every random medical symptom you ever have will be dismissed as fibro by doctors for evermore, no matter how random.

The dizziness sounds like POTS. I have a POTS like condition caused by ehlers danlos syndrome. Fibro and CFS aren't uncommon in people who have ehlers danlos, and it can cause joint and muscle pain (because the joints are loose and muscles, ligaments and tendons have to work extra hard). If you have any hypermobility in your joints, it's worth considering (I always thought I had no hypermobility until a physio rolled my ankles around and got me to touch my arm with my thumb for the first time).

I also had issues after glandular fever, although I was 14, rather than 3. I haven't been quite right since.

KatieB55 Thu 18-Jun-20 21:23:08

Look at POTS UK website - there is a list of symptoms & specialists on there. Don't accept diagnosis of ME/CFS until tests have been done to rule out other causes of your symptoms.

Wifeofbikerviking Thu 18-Jun-20 21:54:55

I was diagnosed with ME however dr is now trying to rule out MS with a mri as other symptoms are here 😪 the problem is there are many conditions with similar symptoms.
If you do not feel right definitly to the doctor. It could take some time to get to the bottom if it, or it could be something fairly easy to treat such as underactive thyroid

demolitionduo Thu 18-Jun-20 22:11:01

I have a diagnosis of CFS/M.E. I was officially diagnosed in 2016 but I have been varying degrees of unwell since 1982 when I had Glandular Fever.

My symptoms have varied over the years but got significantly
worse in 2015/2016 after a stressful life event.

Unfortunately there is no one test to confirm a diagnosis and instead it's lots of tests to rule out what it isn't. Over the years I've had numerous blood tests/ xrays and MRI scans (sore joints). Nothing of note ever showed up.
Eventually I was referred to a rheumatologist who confirmed it was CFS.
Unfortunately there is no cure but there are treatments you can try to help with better sleep and manage pain.
I'd recommend the M.E. Association website- lots of helpful literature. There are also lots of support groups on FB which can be helpful.

Definitely go to your GP and ask them to run the usual tests. If you don't feel your GP is supportive, find another. There appears a fair few GP's who don't believe in CFS/M.E. You will need an understanding one to deal with the tests and refer you for a diagnosis if necessary.

My advice is be kind to yourself. Look up pacing techniques and be sensible on what you use your energy on.
Eat well and if you don't have a great diet invest in some good quality supplements.
Before my symptoms worsened I found that Pharmaton Vitality capsules really helped manage my fatigue.

I hope you get support and answers so you can decide what works best for you.

Feel free to PM me if you have any other questions.

DutifulDaughterWifeMother Thu 18-Jun-20 22:57:24

Just wondering if you have private health insurance? Through your employer maybe? I saw the rheumatologist quickly after getting my gp to write the referral letter & after running all the necessary tests I had a diagnosis within a fortnight. There were lots of tests & special blood ones. My condition has been tracked back to a traumatic childbirth as that is when all my symptoms started. Having private health insurance has been a godsend. I had to take ill health retirement because I could no longer work but I have been able to see the pain specialist etc all thru my husbands insurance & it does make things easier. My GP was fantastic & couldn’t do enough for me. I know it’s difficult but do try & persevere and find a sympathetic GP. X

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