Chronic Illness Support Squad

[Janine-RO]

Heya @Tiny_leaf , yep I had an IV iron infusion done a few years ago, I was pretty lucky with side effects, I just experienced a bit of discomfort and nausea from memory. It did take a few weeks until I noticed a bit improvement in how I was feeling - but once I did it was like a miracle! I hope you start feeling better soon. Did your doctor give you an idea of how long the side effects would be expected to last for you? 

[Tiny_leaf]

Thanks @Janine-RO 

I think that mine happened on Thursday but I can't remember because I have no sense of time.

Idk when the symptoms are meant to stop. They haven't been too bad today but I've been asleep for most of it so I wouldn't know.

[MaryRO]

Hey @Tiny_leaf,

It's great to hear that your symptoms haven't been too bad today and that you are getting plenty of rest.  Sometimes that just what the body needs.  It can also be a healthy to do away with the clock and let time blend from time to time.  It sounds like you are allowing your body a very needed break.  

[Dream_State]

@Tiny_leaf I had one this time last year.

I didn’t have any side effects luckily. It was more a matter of reducing my symptoms of iron deficiency. That said, I don’t have cfs or chronic pain luckily so it might be different depending on what’s going on with you. 

I hope all is okay

[WheresMySquishy]

@Tiny_leaf  I luckily haven't had an iron infusion because my low iron stores are just being managed with tablets.
But I hope that the side effects lessen and that you're feeling better now.

[Tiny_leaf]

Thanks everyone 

Unfortunately there wasn't much I could do other than wait it out, but the side effects are gone and I have a lot more energy now.

It turns out I was actually pretty anemic and that the iron loss happened very suddenly. If I loose the new iron that they've put in they're going to have to check for internal bleeding. My money's on my uterus. 

In new news, I've managed to nearly faint today!! It didn't help that I was on a particularly tall horse at the time.

I think it was a sudden drop in blood pressure but I don't know for sure, and because of how sudden and bad it was, I'm going to have to head back to the doctor to double check it's not a heart thing.

[Hannah-RO]

Hey @Tiny_leaf 

I'm so glad to hear that the side effects from your transfusion are gone and you've got more energy now. I know a few people in my life who have had iron transfusions who said it helped them more than they ever imagined it would,  I really hope you get the same experience now the side effects have worn off 

I'm so sorry to hear about the fainting at horse riding, it must have been an incredibly stressful experience   I hope your doctor is able to give you the answers and support you deserve 

[Hozzles]

Will update in my own thread... but how on earth do people cope with things constantly not showing up on any tests? And the waiting times? I went to the doctor today for my spinal MRI results and he said 'it looks pretty normal, but the neurologist will interpret it better'... I don't see the neurologist in 4 months. He gave me the write-up and it does say there's a few abnormalities but like not enough strong evidence towards anything... 

Ugh, I'm so exhausted. It sounds horrible but I just wish some test would show something. I'm in so much pain a lot of the time and it half feels like I'm making it up because there's no answers...

[Tiny_leaf]

@Hozzles urgh I know.. 

Like the defining point of one of my conditions is that it doesn't show up on any tests.

I was only able to get diagnosed after @WheresMySquishy posted an awareness thread on it and I recognised the symptoms. (Thanks again for that thread @WheresMySquishy)

Do you/ your doctor have any theories so far?

[Hozzles]

@Tiny_leaf nothing, except for anxiety  I've thought it might be MS because it comes and goes + gets so much worse in heat but my scans haven't showed anything as far as I know (and I'm terrified it could be something that gets progressively worse)... I've also thought it might just be my horrible posture putting pressure on my nerves lol I don't know but surely it has to be something neurological! The worst part is that my doctors won't suggest anything, like every single possible diagnosis is a bad word and the only option is anxiety!

My family is looking for a new doctor soon, and my psychologist suggested a few GPs that she knows actually like to investigate problems. Hopefully I can see one of those soon...

That's so awesome that @WheresMySquishy's thread helped you find some answers!!