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Autoimmune disease

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Flip

Original poster

Any PA sufferers?

10 replies

Okite · 01/05/2017 20:37

Feeling pretty crappy today. Have had a tough weekend, spent a lot of time in bed. It's hard to explain to people how different it feels from normal tiredness. My DD made me a get well soon card which had me in floods of tears because how can I explain to a small child that I won't get well, that I'll have this forever?
Urgh, hate this stupid illness.

OP posts:

zen1 · 01/05/2017 20:47

Is it psoriatic arthritis or pernicious anaemia you are suffering from Okite?

Original poster

Okite · 01/05/2017 21:11

It's pernicious anaemia - doh, didn't realise there was another PA

OP posts:

theotherendofthesockportal · 01/05/2017 21:36

I'm awaiting an official diagnosis but I'm fairly sure I have it. I'm constantly breathless, dizzy and exhausted. Would like to talk to others who have and learn tips for coping with life.

zen1 · 01/05/2017 22:21

I was diagnosed a couple of months ago. I have had the initial B12 loading injections, but still can't get through the day without a nap after lunch. I also spend quite a lot of time in bed some weekends. My levels were in single figures when I had the tests, so I guess it will take some time to build them back up again. I did read on the pernicious anaemia society website that folic acid helps you absorb B12 so I have been taking that as well as I am very difficient in folate. Are you having injections?

shadowfax07 · 01/05/2017 23:07

Fellow sufferer here! My loading doses had me acting like the Duracell bunny, but the effect seems to be wearing thin. I didn't realise that folic acid helps to absorb B12, I'll try taking some.

BarchesterFlowers · 02/05/2017 04:25

I have had it for many years.

I do get very tired but I try to keep as fit as I can, even if it means I need a nap after a bike ride. I dint drink very often, eat well and take floradix religiously.

My injections are two monthly which helps.

Being active really helps me, yesterday I did a hilly bike ride and walked the dog. Insomnia and sore Achilles' tendons bug me but I cope.

BarchesterFlowers · 02/05/2017 04:29

Must add though, that I work f/t in four days and I often spend the morning of my day off in bed! So not all plain sailing.

zen1 · 02/05/2017 13:10

That's interesting Barchester. I also suffer from insomnia, even though I am tired in the day.

theotherendofthesockportal · 02/05/2017 13:30

Has anyone been able to claim PIP for this condition (don't flame me, I work full time, and have no intention of quitting, I find every day a struggle)

Original poster

Okite · 02/05/2017 13:53

sock I'm on the PA FB page and some people on there have claimed I think, although I don't know if they also have other conditions.

OP posts:

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