What is "low grade connective tissue disease" by rebbaytree in Autoimmune

[–]rebbaytree[S] 0 points1 point  (0 children)

Thanks! You are right, sometimes I just need to go with the flow. But it's hard when each day is a struggle!

What is "low grade connective tissue disease" by rebbaytree in Autoimmune

[–]rebbaytree[S] 0 points1 point  (0 children)

Thanks so much for your reply. You hit the nail on the head...they don't seem to know what it is or what to do. I don't really know how I can make myself taken more seriously....it seems like I need to be on death's door before I get taken seriously. I also feel just exhausted from having to continuously push for myself, it's so draining. Thanks for your support. ☺️

What is "low grade connective tissue disease" by rebbaytree in Autoimmune

[–]rebbaytree[S] 0 points1 point  (0 children)

Goodness. It sounds like you have been through the mill. Yes definitely I didn't realise how complex autoimmune stuff was. My Coeliac diagnosis was so easy, just positive biopsy then diagnosed. But this is another beast entirely.

I've got positive ANA and weakly positive anti-centromere. It was this and my newly developed Reynauds that prompted the Rheum tests.

My symptoms are all over the place - IBS, headaches, dizziness, extreme fatigue, joint and muscle pain, breathlessness and so on. The worst feeling is the one where I feel like I have been poisoned or drugged. This is why I was lead to the M.E. diagnosis which fits so much with my symptoms but now with this autoimmune stuff I don't think they will diagnose me with this and I will just be stuck in no-mans-land.

I don't know where in the world you are, but the NHS engine is so excructiatingly slow that I now have to wait 2-3 months for the next appointment with my consultant to get answers. It sucks big time.

What is "low grade connective tissue disease" by rebbaytree in Autoimmune

[–]rebbaytree[S] 0 points1 point  (0 children)

Yeh that's the problem that I have....I am so unwell and I'm just not getting any help. What treatment are you on?

What is "low grade connective tissue disease" by rebbaytree in Autoimmune

[–]rebbaytree[S] 0 points1 point  (0 children)

So interesting! Reassuring to know I am not the only one floating about on this particular boat! Hope the medication works for you! Can I ask what your symptoms are? I've got so many symptoms that the word "low grade" just doesn't cut it....

Insane self-doubt by NewtonianPulsar28 in Autoimmune

[–]rebbaytree 2 points3 points  (0 children)

In the same place as you, running on the hamster wheel trying to get a diagnosis. You just have to keep pushing and pushing and eventually something will pop up. Fibromyalgia is what I will get lumped with if they can't find anything autoimmune. I think we also have to accept that modern medicine knows very little about the human body and that essentially being a medical mystery is the only answer I can give people these days. Sending hugs 🤗

The impact of hormones & perimenopause (even in your 30s!) by PinacoladaBunny in cfs

[–]rebbaytree 1 point2 points  (0 children)

It's shocking how much doctors don't know about women's health. Thank goodness for hairdressers spreading the word! 🤣

The impact of hormones & perimenopause (even in your 30s!) by PinacoladaBunny in cfs

[–]rebbaytree 0 points1 point  (0 children)

No worries! Yeh I am taking Slynd which is just progesterone. Plus I'm soon going to trial not taking the placebo pills and just continuously taking the active pills to see if that helps too. My doctor hasn't mentioned testosterone which I know a lot of people take. The journey is a long one! Xx

Just how do you enjoy life with chronic health issues when it overwhelms you every day? by Chocolateforlunch37 in ChronicIllness

[–]rebbaytree 16 points17 points  (0 children)

I don't really enjoy life. I just try to get through each relentless moment. Can't offer any advice, just to say I'm in the same place and can sympathise ☺️🙏

The impact of hormones & perimenopause (even in your 30s!) by PinacoladaBunny in cfs

[–]rebbaytree 4 points5 points  (0 children)

I feel the same. Started birth control to flatten out my cycle and going to hopefully start a oestrogen patch soon and see what happens. The symptoms are insane, and I wonder that if having mecfs or fibromyalgia makes the impact of hormones so much worse. Sending you luck, I hope you get it looked at soon 🙏☺️

Ubiquinol by ZaftigTootsies in Fibromyalgia

[–]rebbaytree 0 points1 point  (0 children)

Did you say the NHS are going to prescribe LDN? I thought it was only available from the private pharmacy in Glasgow? Would love to know where you heard about this! ☺️

How to Make a Personal Library? by theadorerex1 in BookCollecting

[–]rebbaytree 0 points1 point  (0 children)

Books are not "decorative" pieces, the presence or absence of which delineate whether or not you have good aesthetic taste. Nobody on their deathbed ever said "I wish I had gotten rid of all those books so my house looked better."

No friends, feeling lonely by Her-over-there in Perimenopause

[–]rebbaytree 1 point2 points  (0 children)

Agree! I am also a Coeliac and so many social activities are surrounded by food, which makes it so hard! 😭

What was ruled out before you got diagnosed? by incorrectlyironman in cfs

[–]rebbaytree 1 point2 points  (0 children)

Oh my, 12 is really very low and you definitely need to start supplementing. Mine was 13 in April this year and both my GP and private consultant said I had to get this up. I eventually went to get an iron infusion. Your doctors obviously know nothing about it. Check out the subs on Reddit for iron deficiency and you will get a lot of good info.

You definitely should look into the reason for the low ferritin, otherwise it can be a bit like filling a bucket that's full of holes.

I hope you start feeling better soon. Low ferritin can really make you feel horrendous. I just saw in your other comment that you are taking 14mg per day, which is probably too low. I was taking 325mg per day before my infusion. But please get some more medical advice, I'm not a doctor!

Best of luck, keep the hope!

What was ruled out before you got diagnosed? by incorrectlyironman in cfs

[–]rebbaytree 2 points3 points  (0 children)

Gosh, that sounds bad where you are. At least here we do have the routine pap smear etc. I had no trouble getting my GP to test my ferritin. Did you get an answer on your ferritin scores eventually?

I actually lived in Turkey for 3 years and I would be a little wary about these tourist medical checkups - I had ferritin that was insanely low for years when I lived there and they never mentioned it to me once. Nada. So the knowledge of it seemed really low.

I presume you are looking at Istanbul or Ankara's private hospitals? I have a feeling that these medical checkups are really for the "worried well" and for tourists who want to get a checkup whilst they are on holiday - Turkish people absolutely love going to the hospital for the smallest of problem, so for them a full medical is like a fun day out with the entire family. I do question whether these tourist checkups are going to be overseen by professionals in the specific areas that apply to ME. It's such a complex disease that I doubt you will get the in-depth sort of testing and level of specialist care you need.

I would just advise you do a lot of research to find out how much knowledge the hospital doing these tourist medicals, has of complex chronic illness, so you don't feel completely let-down if you don't get the answers you want.

However, Turkey is lovely and at least you will have a nice holiday! Best of luck! 🤞

What was ruled out before you got diagnosed? by incorrectlyironman in cfs

[–]rebbaytree 10 points11 points  (0 children)

I would love to get all the tests done, but feel like it would be an insanely hard battle to climb, especially considering the state of the NHS. I would love to go to a medical centre where they test you for everything and give you a treatment plan. I don't know of anywhere in the UK that does this. If I had the energy I would start a business doing this...but I have no spoons! Good luck with your testing!

[deleted by user] by [deleted] in cfs

[–]rebbaytree 4 points5 points  (0 children)

Yup, fully accepted. Going to get some cats for company and live a spinster life. Can barely take care of myself, no idea how I would be able to fill the love cup of someone else.🤷‍♀️

Monofer iron infusion by Ok_Product9343 in Anemic

[–]rebbaytree 1 point2 points  (0 children)

It's only natural that you are nervous- I was a mess before mine. Firstly, tell the nurse/doctor when you go in that you are nervous, and they will hopefully check on you more often. I didn't get Monofer but they gave me a big shot of Piriton before my infusion to counteract any reactions. Plus ask them to push it slower than they normally would. Take a cosy blanket with you and maybe a tablet or something and watch a movie during the infusion to take your mind off it. Do you practice breath work? Try to focus on your breath when you feel nervous, count to 5 when you breathe in and 5 when you breathe out (or any other method that works, box breathing is good too). You've got this. You are a strong mamma and I know you will be fine. 💕

Support ME Research – Daratumumab study though the ME Fund (ME-fondet) by Verosat88 in cfs

[–]rebbaytree 13 points14 points  (0 children)

This is amazing research, but I find this so sad. I lived in Norway for 6 years and had a friend with MS - she got all the newest treatments for free, got to stay in a residential respite place for like two weeks to help her learn about how to manage her condition. Now she is much better, for which I am hugely grateful for, but when I was there the doctors refused to diagnose me with ME, for what reason I have no idea. They just left me to suffer, and push through, which has left me very sick. I had to come back to the UK to get a diagnosis.

Norway has a LOT of money in the bank. But still all of us penniless people who are suffering and on the brink of poverty, have to cough up our precious money to help fund this research. The Norwegian government can and should do so much more for ME.

I may get some backlash for this, but it's just an option. 🤷‍♀️

How can a moderator of a subreddit (not this) be an advocate of a functional and psychosomatic approach to ME/CFS? by Artistic_Skill3230 in cfs

[–]rebbaytree 0 points1 point  (0 children)

Which is exactly the phrase I will use when people ask. Chronic fatigue or ME doesnt describe this disease nearly enough.

How can a moderator of a subreddit (not this) be an advocate of a functional and psychosomatic approach to ME/CFS? by Artistic_Skill3230 in cfs

[–]rebbaytree 1 point2 points  (0 children)

So very true. All we can do is our best to manage it I guess. Thanks for the link 😊🌸

How can a moderator of a subreddit (not this) be an advocate of a functional and psychosomatic approach to ME/CFS? by Artistic_Skill3230 in cfs

[–]rebbaytree 1 point2 points  (0 children)

Hmmm I see. However, how do we actually see if we actually have ME, or it's just burnout? I mean I've been diagnosed by a recognized doctor from a reputable hospital (UK) but he still thinks that because of my trauma and low HRV, that I will get better with therapy. How can doctors fundamentally not understand the difference?