Hello 😎

[Kellthebell]

Hello everybody, I’m new to this group but not to this website…. It’s so hard to know what to say to people these days everyone starts with how are you and It’s an instant downer! How do you cope with that? I never quite sure what to say. Usually it’s something like ‘I’m fine but don’t look too close’ or ‘surviving not thriving’ but I don’t want to lie or minimise the truth of my situation. I suppose I’m having an existential crisis.!!

My neurologist has decided I have m.e and put it on my drs notes but I suspect I’ve had it most of my life (well at least since getting glandular fever has a nine-year-old ) and it’s only become more recognisable since having an anaphylactic reaction in 2016 and Long Covid in 2019… the strangest thing is the symptoms keep changing… they just keep coming like waves on the sea….

I have had. ACT therapy -and a Fatigue workshop as part of my long Covid treatment ., but no help for the m.e as such, it’s been so scary because the symptoms often look so much like m.s… they’re such an overlap for m.e. Just having a brief look at the posts on this group I can see there’s a lot of similarities. I can’t help to be a little dramatic - I have 3 pages of symptoms, and yet I’m very aware and greatful that it could be so much worse.

My most annoying problem at this present moment are my eyes., the prescription gets worse at a ridiculously fast rate, they are very sore and light sensitive and I’ve gone from an average reader to an audiobook listener. At night my eyes just feel like they are moving uncontrollably so I put an eye mask on to weigh them down. Does anyone else get that? 2nd worst- chest pain. That’s really weird too- cold sensations and tight, heavy sensations as well as palpitations…

I also have terrible adrenaline dumps in between 3 and 5 am which could be related to my hashimotos…. And I have many of the symptoms of dysautomnia, but confusingly I have very low blood pressure and low blood sugar…. So I have all the dizziness and fatigue and nausea ect without the high blood pressure.

My worst thing is, I feel so guilty. And frustrated and bored! My sense of humour is getting very dark! I’m not sure what I’m trying to achieve by writing this post… just putting it out there I guess! I hope you find some glimmers and moments from of joy among it all.

[Obsdian]

I write posts like this, where it seems like your leading to a question but then you aren't.

Currently waitong ony second referral for a cfs assessment as ky first got rejected due to new symptoms that turned out to ne dysautonomia. Now waiting again from the start on a new one.

I was rocking along great until June 2023 when everything started happening. Hashimoto's and cfs symptoms started at the same time after a virus that was covid-like. The thyroid issues have come a long way but they cfs symptoms haven't and I am more no longer skeptical about what they are. The post exertion malaise is a massive symptom for me. I have been reading about cfs while I wait and there seems a lot of other things too but I forget what they are, thank you brain fog.

Also kind of difficult to sometimes pick which symptom is coming from what.

As for what do I say when asked how I am.... Sadly no one asks anymore as all but one person drifted away while I have been ill. But, my former answers were either meh or to tell it like it is which is really not what anyone wants to hear because asking tends to lead to that person wanting to talk about themselves.

I am bored too! Resigned from my job last momth after 8 months off ill. But, I haven't the energy to do much. I am doing great at pacing which is both good and makes me feel worse. Pacing and sticking to my rules makes me feely best.... But it makes me feel like I can break the rules and do more anr every time I can't it feels like a slap in the face.

I think I am technically going through a better period right now, I feel a lot more mentally alert... But, it's not fun having clarity to think about stuff.

[Kellthebell in reply to Obsdian]

I’m going to practice ‘meh’! I think we’re sort of on parallel lines…. Did you have B vit issues and iron oddities and all that jazz? Pacing is definitely the key, you can pace a certain amount but life does throw a few curve balls. Leaving work must have been quite epic, did it feel like a burden released? I homeschool my daughter, she has her own autoimmune health issues too, so we can adjust our routine and keep flexible. The school run was very traumatic! It’s very hard to untangle all the different health issues, I have come to believe that with m.e it’s such a broad spectrum of weirdness.

[Obsdian in reply to Kellthebell]

My b12 goes up and down for no reason I can pinpoint but never gets high enough to think I hit that happy zone.

My iron is weird as my TIBC (think that's the right abbreviation) said I was anemic but the other bunch of iron related tests said I wasn't.

I only discovered my calling in life about 3 or so years ago to work with children with severe disabilities (most of my time was with kids with nonverbal kids with severe autism and behavioral issues). I absolutely loved it. Had a few months working with kids with severe mental, physical and medical needs as I couldn't handle the physical aspect with the other kids anymore. Then, dysautonomia hit and I wasn't able to return.

Soooooooo, my job feels like a loss not a burden released. I treated every child like my very own so it's like losing family almost.

I used to be afraid to get diagnosed with cfs, but at this point I can't wait to pull more pieces together. I guess I hope for more guidance but am aware people seem to say they don't end up getting any.

I would like to get someone in my corner to support me refusing to reduce my beta blockers though. The cardiologist originally said dysautonomia will go away and reduce slowly to eliminate beta blockers each month. I've done one reduction in September and nothing at all adjusted other than side effects so have been refusing to do it again. I don't see the benefit on making life harder.

[Kellthebell in reply to Obsdian]

I hope you get a chance at your vocation again, my daughter is autistic, I probably am- I am officially an adhd’r and dyslexic. We need people like you who advocate well.

[Obsdian in reply to Kellthebell]

I hope so. I don't think I will be able to return to the school again but am hoping maybe some daytime respite work part time (one day) with some local places.

[klr31]

Yes, I can relate. It's so difficult to reply to "how are you?", especially when people don't generally want to know or hear the truth anyway. As for worsening symptoms, I see you are a thyroid sufferer too, like me. What are your latest blood tests I.e TSH, T4, T3, as well as ferritin, folate, B12 and D? Get the actual numbers with reference ranges. At the Long Covid clinic have they looked at your small blood vessels? I can't remember how but I seem to remember these can be affected by covid.

Good luck.

Karen

[Kellthebell in reply to klr31]

Ohh you sound like you’re getting a much better service than me! I was cross that in my annual check up they only checked my tsh which is always normal but it’s my t4 is often wonky. They changed the parameters about a year ago and what was low is now in an acceptable range…. But I was told not to go by those numbers because I have a goiter with nodules. Glamorous! I don’t believe they looked at my blood vessels I have so many unanswered questions about my diagnosis- so many investigations that I haven’t had the report for and it’s not on the nhs app. It’s not a good time to be off the ball! One thing that I have learnt which is useful is that I need to have the methy version of B vits, as I wasn’t absorbing the standard kind!

[klr31 in reply to Kellthebell]

I haven't had Covid or been to a clinic but I've read about tests they should look at if you are struggling.

As for thyroid tests, I've learnt a lot over the years due to my own bad experiences and not knowing enough. If you can afford private blood tests, then go for that but your surgery should really test your TSH, T4 and T3. You are entitled to your results with reference ranges. Don't go by 'normal' as that might still be not optimal. Are you taking thyroxine?

I assume you have B12 deficiency? So you are having injections?

Karen

[Kellthebell in reply to klr31]

Yup Levothyroxine, funnily enough b12 is good but the folate and iron dip. Sounds like you learnt the hard way with the thyroid? My test results had been normal most of my life despite always having the symptoms, but I think having chronic fatigue symptoms running alongside may have blurred the picture. My dad has an underactive thyroid which is supposed to be quite rare for the chaps, all the autoimmune challenges come from him!

[klr31 in reply to Kellthebell]

Yes, I did learn the hard way, unfortunately. My autoimmune disease was passed from my father too, only he had Type 1 Diabetes for over 60 years.

I believe it's good to supplement folate if low.

Good luck.

Karen

[klr31 in reply to Kellthebell]

I trusted the doctors knew what they were doing when it came to treating my Hashimoto's. They didn't.

Karen

[Kellthebell in reply to klr31]

Need a sad face emoji but the cookies say no.

[klr31 in reply to Kellthebell]

😩

[Obsdian in reply to Kellthebell]

You have the write to written copies of your tests and all. You can call and demand them.

[Kellthebell in reply to Obsdian]

I’ve sent messages to the practice but I’m still waiting 😅

[ALKT]

For the longest time i just say i am still breathing after all no one really wants to know how much others are suffering . I found the Science for M E website 7 years ago and find that it is the only really busy M e site that trys to stick to actual facts . it also has many pages of useful information and emotional support . i would highly recommend it to people with M E /cfs .

[Kellthebell in reply to ALKT]

I’m looking forward to having a good look at that website, thank you. I’ve seen some badges that say great poignant stuff about chronic illness that address it and lighten up the situation- people really struggle to know what to say and if they say ‘poor you’ I’m not happy with that either! Minefield!

[Obsdian in reply to Kellthebell]

A few have laughed at me for buying tshirts off amazon to express myself with chronic illness slogans.

[Kellthebell in reply to Obsdian]

I’m loving the sound of this! Instagram has some great T-shirt options but I’m always worried it’s a scam!

[peege]

Well I just ignore the "how are you" question. Life is too short and I dont want to hear negative stuff - particularly my own. Imove straight on to "how are the kids" or "long time no see". I really don't want to drone on about my miserable CFS I'm fed up to the back teeth with it and it takes too long to explain to people who haven't a clue.This is the most active thread I've ever seen on here!

You may have a local ME/CFS group who know more about your local health area support.

I joined my local one in Gloucestershire, it's a closed FB group, they have fairly regular meet ups in various parts of Gloucestershire so I've met some people who really get it. One member (who lives in my town is a GP married to a GP, she's a mind of information in getting the best out of local NHS. My nearest meet up once per month us just 5 minutes walk from my home. Its a little lifeline & I definitely feel less isolated.

[Kellthebell in reply to peege]

You found your tribe- perfect! That must be quite affirming and such a treat to find somewhere five minutes away, I’m quite rural and the only thing five minutes from me is mud, hedges and cows. They are quite therapeutic, good listeners but not very talkative!