Reassurance over symptoms

[Littledancingtiger]

Just seeking a bit of reassurance. 3 weeks into every other day injections. On the second week I started to notice I would have a day without my tongue burning or any body tingling/stabbing. Then symptoms would come back quite mildly. It seemed to be getting a lot better. However this week my tongues started burning quite a bit again, legs and arms tingling/stabbing pains in body along with even itchy feet which I never had before. Some things haven’t come back though my skin is a better colour, I’m more clear headed, don’t feel like I have flu or in a fog, eyes aren’t as bad.

I over did it last Thursday and Friday by walking 6-7 miles on each. I then got very stressed out on Tuesday and Wednesday and seemed to go downhill from there. Could that have been enough to set me back?

My folate/ferritin/thyroid/vit D have all come back absolutely spot on. Just a bit worried something has gone wrong!

[Wagonwheel]

Hi EmilyCJ

I’m around 8 weeks into injections every other day (4 weeks SI) and still noticing improvements.

My symptoms reoccur less frequently, I can exercise more intensively and work for longer with milder episodes of chronic fatigue following.

Prior to fairly recently i was very up and down, I kept getting colds, one day I’d feel fine then wiped out for the next for 2-3 days, running would really knock me back but I persevered with shorter runs as I felt I need to for my mental health.

Your post made me realise how much I’ve improved lately and I think you’re just having a dip, hang on in there you’ll feel better soon!

All the best!

[Littledancingtiger in reply to Wagonwheel]

I’m so glad you’ve improved sounds like you’re doing great.

Thank you. Funny actually I seem to keep getting colds too I feel stuffed up again today and sneezy.

[Wagonwheel in reply to Littledancingtiger]

I think its your immune system kicking in now it’s starting to work properly again.

I really empathise with you, it’s a miserable disease but you will be better soon

[Littledancingtiger in reply to Wagonwheel]

Thanks. Natural worrier and need a bit of reassurance every now and then. Self-injection seems to be going smoothly enough. I’m mad with myself I didn’t start sooner! Didn’t appreciate how bad this could be when first diagnosed it was only when my injections were pushed to 12 weeks from 8 I started to get really ill.

It is indeed miserable you’re right. Also hard as family and friends don’t appreciate how horrific it can be. I keep saying look up the meaning of pernicious it isn’t a nice thing.

[Wagonwheel in reply to Littledancingtiger]

I too had no idea how bad it could be (or was beforehand) until a week after my initial loading doses, the following few weeks were horrendous, very dark and desperate indeed. I live alone and didn’t leave my half renovated (half derelict) flat much. This place was amazing and my allotment friends too 😊

I’ve stopped talking about it mainly, except to my bestie, we call it vicious pernicious! She’s seen first hand the changes in me over the last 5 or 6 years most other people see you and assume everything’s fine.

[Nackapan in reply to Wagonwheel]

Yes that's where I feel now in a dark place. I don't live alone. So being fed and watered. But hardy moved from my bedroom. So weak. So even as though you don't talk about it much how long did it take you to be able to walk outside or even drive?

Glad you have a beastie friend

[Nackapan in reply to Nackapan]

That was meant to say best friend☺

[Wagonwheel in reply to Nackapan]

I'm really sorry to hear that, I really empathise with you, hang on in there you will feel better.

I've just been looking back through my diary and although it feels like months and months I've been bidaily SI for 6 weeks. Though I was pretty bed ridden I still had to get out to go shopping, cook, run my airbnb and walk my dog a couple of times a day so even though I felt very teary and wobbly while doing these things they probably helped my mental health a little, then I'd crash out in bed.

It has been one step forward one step back but the last couple of weeks I've been feeling much better in terms of being able to do more physical stuff, running, allotment, longer working hours, BUT I am beginning to accept that I'm not the same as I was and that I do get worn out and so need to be mindful of this.

At the time I started bidaily SI my doctor told me my vit D, although in range, was low (given it was tested during the hot summer) and advised I should take 25mg vit D3, I think this has made a huge difference to my mood as well.

Are you getting regular B12 shots Nackapan?

Wishing you well x

[Nackapan in reply to Wagonwheel]

I am now! Every other day for the last 2 weeks as my symptoms were not improving. Have had a chink of light. 5 minutes walk. Back to sheer exhaustion at present. Try to push through but doesn't work as worse the next day

[fbirder]

B12 is involved in many different biological processes. These will start working properly again at different rates. That means that symptoms will change at different rates.

And it’s not unusual for some to get worse for a little while. As long as there’s a slow improvement there’s nothing to worry about.

A lot of us start feeling better then start behaving like we did before we were ill. Like walking 7 miles. You have to bear in mind that you have a fairly serious condition and behave accordingly. Build up your exercise slowly.

[Littledancingtiger in reply to fbirder]

Thank you. That does make complete sense.

Family and friends don’t understand very well. They’re like you’re getting B12 now what’s the problem you’ve always walked a lot. But I do really need to be more careful.

[Melbourne-Girl in reply to Littledancingtiger]

Emily glad your injections going well. Did my explaination of your sub cutaneous injections make sense to you? I thought that it may have been better doing a diagram,

Keep up the good work

Suzee xx

🍀🍀🍀

[Siobhan1965]

Hi, I've been SI for past year. At that point I was literally running on empty and felt as though I was slipping away. I was actually quietly preparing for not being here and sorting my affairs so my family would be OK.

A year later I have good days and not so. Occasionally the bad days come back. This is always when I over do things and I mean really over do!

I'm a bit of a workaholic and always speaking at Conferences etc which is a late night early morning circuit. Alcohol is a no no I've found. Learning to pace myself now which is frustrating but only way.

Give it time and keep a diary of activity v symptoms. Good health.

[Littledancingtiger in reply to Siobhan1965]

Thank you. I think I’m finding healing is not a straight line but more of a zig-zag... This is completely foreign territory for me as I’ve had PA for years and the most it ever did before was make me tired. I think this is why family and friends are really struggling to understand what’s happened/happening too.

The decrease in my injections has taken a toll over a very long period of time; it crept up on me and then turned very nasty indeed. I suppose I cannot expect over night miracles! I wish I could have a while off work to rest and heal as the weekends I find if I rest it seems to make things better but alas bills need paying and life cannot stop. I’m looking forward to the Christmas break as I will treat my body to some good quality healing time.

[Miss-guineapig]

Hi Emily, I am not an expert but a year into having PA, I remember clearly symptoms coming and going, good and bad days, hard days, ill and tired days, exhausted days.....it remains the same but now, But I now have lots of good days (Definately not them all of course), and I am well and much much better than a year ago for sure, my head is clearly, I can walk my dogs miles, I have energy most days....so Emily continue on this journey and enjoy the good days, rest the bad days.

It's one of these disease that fluctuates all the time and I can find no reason. I am in a much better place than last year and so very lucky that my GP really listens and supports me. The site has been a true God send to me and I just think hey ho it's a good or not so good today, and my husband understand, so I am very lucky. Best wishes for your health and hope my opinion has helped.xx