• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ME/CFS? At the end of my tether!

K

katkins_78

Messages
4
icon1.png
ME/CFS? Am at the end of my tether.
Hi all,

Was hoping you could give me some advice.

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 today).

I am absolutely sick of feeling like death warmed up 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. Also have night sweats.
•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!
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
katkins_78 said:
•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
Click to expand...

This especially sounds like early-stage ME could be a possibility. I remember walking across my living room and just having my knees buckle without warning. I don't think the weakness goes away over time so much as we eventually compensate for it if the symptom gets to a place where it is (relatively) consistent.

The neurological and GI stuff fits as well, and you appear to have some autonomic stuff going on as well.

I'm not sure where you are located, but I would recommend seeing an ME specialist with a good reputation.
 
Hutan

Hutan

Senior Member
Messages
1,099
Location
New Zealand
katkins_78 said:
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?:
Click to expand...
Certainly plausible.

A key symptom to watch out for is post-exertion malaise. That is when your other symptoms get worse sometime (perhaps a day) after exertion (physical exertion but also can be mental exertion). Maybe keep a diary noting significant exertion and your symptoms and see if you can see a pattern.

As @JaimeS said, you may well have some autonomic problems. Research orthostatic intolerance (see for example the POTS UK website) and decide if that is worth investigating further. There are some treatments for orthostatic intolerance that may help. The lack of oxygen to the brain that is part of orthostatic intolerance can cause feelings of panic.
 
K

katkins_78

Messages
4
Great idea to keep a diary Hutan I'll definitely start doing that.

The doctor is testing me for thyroid (again) and calcium deficiency, if that comes back clear I will ask for my vitamin D and B12 to be checked (I'd hoped she'd have dome it in this round of bloods but apparently not). I believe there is an ME/CFS clinic in Essex (UK) where I love and also North London, so if these tests come back clean I will ask for a referral. None of the GP's (primary doctor's) I've seen have really looked at all the symptoms as a whole but it is time that they did I think.

I get what you mean ScottTriGuy - I guess I'll find out which category my GP falls in soon!
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Its sounds like probably ME/CFS.

Important - Before you go heading to a CFS clinic in the UK or asking your dr for a referal to one, find out from members here if the one you will be going to is an okay one or not. (some in UK are very terrible, people with severe ME/CFS there have actually been locked away in mental hospital due to some drs believing this illness is psychological).

Whatever clinic for ME/CFS you go to, it needs to be one which hasnt got the psychological belief for this as after all your symptoms like sore throats, more flu and infections arent a psych thing and bad advice eg GET (graded exercise therapy) can end up leaving your illness much worst.

"•Regular heart palpitations (have been checked for heart problems and been given all clear)"

Posteral Orthostatic Tachycardia Syndrome (POTS) is very common in ME/CFS and it sounds like you may have this. Does your palpitations usually happen when you are upright or or your feet? POTS is treatable some and diagnosable by a poor mans standing test for it (which you could do at home) or by a tilt table test which is done at some hospitals. It isnt a heart issue as such (the heart can be healthy) but rather a problem with the bodies regulation of things such as heart, its an issue with the autonomic system. You may need to see a dr which specialises in this area for POTS.

There are some common abnormalities in ME/CFS which can show up on testing. I suggest to get a copy of your blood test results and post any results out of normal range here to see if they further point possibly towards ME/CFS. (low D is very normal in ME/CFS, low ferritin is common in ME/CFS, low testosterone is common in us etc)
 
Last edited:
justy

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Your best bet is to see an ME Dr who will be able to get to the root cause - most people who see top ME Drs do find abnormalities, some of which can be treated. In my experience the NHS is never going to be able to help you.

I second Vojta's suggestion that you get tested for Lyme and co infections - you may have to do this privately. The other thing that I thought of was MCAS - Mast Cell Activation Syndrome - this can cause a lot of the symptoms you describe. I have MCAS, and M.E, but as a consequence of years of undiagnosed untreated bacterial infections like Lyme.

To check out MCAS (which is hard to diagnose and quite rare and not understood by the NHS at all) I suggest you read Dr Afrin's book 'Never bet against Occam' he is a world leader in MCAS and this is the most authoritative book on the subject. When I read it recently I had a real aha moment and I think many people with ME might have MCAS underlying their illness.

Good luck with the search.
 
Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
katkins_78 said:
I will ask for my vitamin D and B12 to be checked
Click to expand...
Your doc will only test for total B12--which is a bit meaningless as it is very possible that a good portion of it will not be bio-available to you. Many feel that a better test is the organic acid methylmalonic acid which tests the levels of an active form of B12.

katkins_78 said:
I believe there is an ME/CFS clinic in Essex (UK) where I love and also North London, so if these tests come back clean I will ask for a referral.
Click to expand...
As others have said, it is important to find out about these clinics before accepting a referral. From what I have read here (I am in the US so no personal experience) any ME/CFS clinic in the UK is going to prescribe GET (graded exercise therapy--a disaster for many of us) and CBT (cognitive behavioral therapy--useless for most). I doubt if you will find any UK ME/CFS clinics who treat this as a biological illness.
 
ryan31337

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @katkins_78,

Sorry to hear that you're suffering.

My personal opinion is that an ME/CFS diagnosis in the UK isn't much help, its probably even detrimental to your healthcare options as it'll close doors to further investigations. I would echo the others here and say look long and hard at autonomic/orthostatic issues that could explain the vast majority of your symptom list. If you focus on these you can actually get investigations, treatments and an irrefutable diagnosis. You may or may not get to the root cause of your problems but you will likely find some therapies that can make life better, the same cannot be said for 'treating' ME/CFS here currently.

I would self-refer or choose to see someone from this list, don't expect your local consultants to have much interest/understanding of these issues: http://www.potsuk.org/doctors - I am personally seeing Dr Gall in London and cannot praise him highly enough.

Good luck :)
 
K

katkins_78

Messages
4
Thanks for the posts - sorry for such a late reply, it has been a hectic couple of days which has completely knocked me out. So my Thyroid and Calcium blood test came back normal - which is disappointing (I love the way the GP's receptionist says it in a really positive way when all I'm thinking is "I just want a diagnosis!").

We're actually off on our postposed honeymoon tomorrow (bad timing really but been looking forward to it for a year!) so I'm going to do some reading up over the next couple of weeks (including rereading your useful posts), and make another appt as soon as I get back from that and ask for additional blood tests to check for vitamin issues and poss. lyme disease.
 
You must log in or register to reply here.