Fluctuating fatigue

The day-to-day experience of people with PA, including experiences at work and medical conditions that might be related to PA

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Fluctuating fatigue

Postby healthchaser37 » Sun Sep 01, 2013 10:43 am

Hello everyone,
I was just wondering if anyone else experiences fluctuating symptoms ie varying bouts if fatigue and weakness. I think this is why it has taken so long to get on the right track diagnosis wise, as my symptoms have fluctuated on a weekly basis for over 6years. Somedays I am much better than others and some weeks like now I am so weak,neck pain and crippling fatigue. I am about to have my last loading dose of once a month before the once every 12weeks. No change as yet,doc says not to pin my hopes on it all being down to B12 def,but rather Chronic Fatigue Syndrome..

Very unhappy today,starting to recognise my need to withdraw from everyone and everything as I can't face it all. I re start dance teaching next week and I just cannot imagine how I will manage. Doc just says she following guidelines and no more injections per week will be offered and then eventually stopped after a year.

Just needed someone to listen today,don't know what to do...

Sorry for the moan,just wondered if anyone else experiences this and should I just get a grip and accept its CFS

C. :pale:
healthchaser37
 
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Re: Fluctuating fatigue

Postby healthchaser37 » Sun Sep 01, 2013 12:03 pm

Thankyou for your reply Andrea :)
I did have the 6,now it's the one a month,then 12weeks,sorry didn't make that clear. I quoted the bfj guidelines and she looked it up and said, "you don't need this amount" the chronic farigue and weakness,vertigo neck pain etc have been going for years and years,but it fluctuates,that's why they say it may be chronic fatigue after all even though my cells are enlarged and my b12 serum 124. I'm so confused and fed up..not unlike everybody else I'm sure!

Want to start self injecting,but she said they will stop the once every 3month injections if I do andi will no longer be seen/supported,therefore no records will be kept for future reference...how do I continue to receive the injections and keep the doctor onside whilst treating myself?? Catch 22!! I thought it would be easy once I heard " it could be B12" but no...

Fed up.com!
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Re: Fluctuating fatigue

Postby healthchaser37 » Mon Sep 02, 2013 2:07 pm

Thank you very much fir your responses. I thinki will start injecting soon. Could I ask you for the type of syringe etc I need,I have no idea!

Thankyou so very much again,here's to everyone maintaining and regaining their health.

Best wishes,
Cate.
healthchaser37
 
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Location: Wales

Re: Fluctuating fatigue

Postby healthchaser37 » Mon Sep 02, 2013 2:28 pm

Thank you Andrea :) I will take look and get into it. I will report back on here.

Cate.
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Re: Fluctuating fatigue

Postby kimks mom » Mon Sep 02, 2013 7:04 pm

Hi Healthchaser,

If you are going to do subcut injections..this is what Missy uses and so does my daughter who also injects subcut:
http://www.medisave.co.uk/bd-micro-fine ... 01026.html

Good luck,

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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Re: Fluctuating fatigue

Postby healthchaser37 » Tue Sep 03, 2013 9:03 am

Thank you Pat. What's the difference between intra muscular and sub cutaneous take up of b12? Im still anxious I'll get dosage and injecting wrong,I'm desperately unwell and with my memory so bad I want to make sure I've got it perfectly right,Thankyou and sorry to keep asking the same questions :oops:

Cate
healthchaser37
 
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Location: Wales

Re: Fluctuating fatigue

Postby healthchaser37 » Tue Sep 03, 2013 12:53 pm

Thankyou Thankyou Thankyou Andrea :) your advice is invaluable,I will be ordering in the next few days and will keep everyone posted.

Best wishes,
Cate. :dance:
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Re: Fluctuating fatigue

Postby lozza » Wed Sep 04, 2013 9:02 pm

All the best with the self injecting- you will not regret doing this and will say " should have done this a long time ago! "


best wishes

Lozza :sunny:
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Re: Fluctuating fatigue

Postby healthchaser37 » Wed Sep 04, 2013 11:46 pm

Thankyou Lozza :D

Any words of wisdom are well received! Hope it is b12 deficiency to blame...been a long long long journey and no support.
Some Friends who have ME and CFS not convinced..they say its CFS just accept it. Can it really be b12 deficiency I'm asking myself..I'm scared to hope for relief and a return to normality,full time work and...energy! I've clung onto so many 'cures' over the last decade..acupuncture,herbalism,healing,myofascial release,phytoplankton and now the Paleo solution...I'm worried I'm setting myself up for another fall..my Locum doc says 'don't pin your hopes on it being b12'
I think I have to just jump straight in and expect nothing,then if it works I'll be ecstatic!

What's your story?

Thankyou for your message,

Best wishes,
Cate.
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Re: Fluctuating fatigue

Postby kimks mom » Thu Sep 05, 2013 2:41 am

I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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Re: Fluctuating fatigue

Postby healthchaser37 » Thu Sep 05, 2013 9:10 am

Thankyou Pat,will do

Cate
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Re: Fluctuating fatigue

Postby Vix » Thu Sep 05, 2013 9:26 am

Hi Cate
I was diagnosed with ME about eleven years ago and found out two years ago I had had a B12 deficiency the whole time. I have also realised that iron deficiency is also a big contributing factor for me. I tried everything under the sun like you to no avail and was scared of putting all my hope in B12, I am so glad I did but for me it has been a long and gradual process so as the others have said don't give up too soon. Keep a diary to help you realise how far you have come. It took daily subcut injections for several months to get the best effect. Others with a diagnosis of ME have had much quicker responses. I potentially have other illnesses too which are complicating my recovery but the B12 has literally been a life saver, you just need to be committed to keeping up the jabs for a substantial period of time.
Good luck!
Vx
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Re: Fluctuating fatigue

Postby healthchaser37 » Thu Sep 05, 2013 9:36 am

Oh that's wonderful news!! That was just hat I wanted to hear!! The diagnosis of ME is a scary one,as you and I know it's a hard one to recover from. Fingers firmly crossed I will see relief as you have. Thankyou for the advice and encouragement,your message has made my day! :dance:

Cate x
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Location: Wales

Re: Fluctuating fatigue

Postby healthchaser37 » Fri Sep 06, 2013 10:35 am

Hi everyone,

I just placed my first order with medisave and goldpharma! I felt nervous about doing it,felt illegal even though I know it's not! I'm still a bit shaky,dramatic but true. My memory is so bad at the moment that I had to keep going over and over the order which added to the nerves. With all your advice on here I'm sure Ill get the hang of doi g it all after a while..not sure how much to inject though..per day? Per week? I'm about to go to the 3 monthly injection from doc after the 8 spaced out loading doses,which I have had no relief from whatsoever...

Your advice is most welcome and Thankyou :)

Cate.
healthchaser37
 
Posts: 50
Joined: Mon Jul 29, 2013 10:22 am
Location: Wales

Re: Fluctuating fatigue

Postby healthchaser37 » Fri Sep 06, 2013 5:17 pm

Hello,Thankyou fir your responses :) I do intend to tell my doc,otherwise if she re tests me she will need to understand why my levels are higher,hope she's ok with it!

Medisave delivery is on Monday!! Hope I don't crash and suffer too much with the die off effect of faulty cells?! I'm going to see fleet wood mac on the 24th in London and I'm really really hoping I can manage the 2 days there.

I will keep posting on progress. Cxx
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