Hi everyone
I hope this doesn't seem nosey - I'm curious how many sufferers manage to hold down a job?
I work full-time just now but every day is a struggle and I feel I can't continue much longer. It's getting harder and harder to keep things together.
If you do - how do you manage? I will feel like I've given up if I need to give up work but don't feel the choice is even mine!
(Should mention I also suffer from few other chronic illnesses so it's a bad combo).
Sharon x
Hi Sharon75 I was diagnosed in 1972 at the age of 30.
When I was 17 in 1959 I had two thirds of my stomach removed due to a perforated peptic ulcer. At the time I was an apprentice electrician and the only advice my surgeon told me was to find myself a sedentary job.
Being 17 years old and previously an otherwise fit and healthy six feet four, thirteen stone four pound "hunk" I ignored his advice and finished my apprenticeship in 1962 at the age of 21.
Electrical work can be quite strenuous and I had begun to notice that my energy levels were declining and an opportunity arose for me to consider a sedentary job when by chance I was involved in the wiring of a warehouse that had been damaged by fire in 1963. A lot of the stock was smoke and/or water damaged but otherwise still usable and I was asked to sift and sort and offered the job of storeman. I rapidly organised the layout of the warehouse and became the buyer.
In 1965 I married my long term (four years) girlfriend Valerie, but sadly within three months she was taken ill with heart valve problems caused by rheumatic fever and was hospitalised for several weeks. The worry and stress wore me down mentally and physically and then I caught 'flu and was signed off sick. After four weeks I was made redundant which only added to my stress. I was signed off for months diagnosed with depression and "fed on" Valium, Tofranil and Librium - plus a powerful antacid called Neutradonna.
By 1967 finances were so bad that I just had to get back to work and asked a builder friend for a job as a labourer doing any electrical work as necessary. This wore me out even more and in the early months of 1968 he had to "let me go" because of shortage of work.
By now I was really almost totally exhausted and once again my doctor signed me off sick and sent me for a "Schilling" test which came back inconclusive for Pernicious Anaemia. Part of the test involved me being given a huge shot of B12 as well as a smaller radioactive amount to drink. I think there's a clue there to how I coped for the next four years.
Unemployed and by now unemployable late in 1968 I was sent for several weeks to an assessment centre to determine what I could be "retrained" for and it was eventually determined that I would be suitable to go on a five month Government sponsored book-keeping/accounts course.
So from September 1969 to February 1970 I attended Princeton College in London studying Accountancy, Commerce, English, Maths and Typing. I left on Friday the 13th and started work on Monday 16th February 1970 for a local International Company - a job which lasted for 27 years. I was also Registered as Disabled backdated to the first of February.
How I coped physically or mentally to get through that course I shall never know. There were nearly a hundred of us disabled persons in an ancient building on the top floor with no lifts and we never had two consecutive classes in the same room having to carry our books and gear with us at the end of each lesson. We were told that if we could cope with these conditions we would manage in any workplace - it was deliberate! The "drop out" rate was high within six weeks.
Sheer determination got me through 1970 and 1971 during which time I had to tackle an "internal merger" which increased my workload and then decimalization.
By early 1972 I was beginning to "flag" and went to my doctor for blood tests which found I was anaemic and prescribed iron pills. These didn't help and I was becoming more like a walking Zombie than a human being so she sent me for a second "unheard of" Schilling test which came back positive and I had my first injection of cyanocobamalin 1000mcg on 10th May 1972.
There were 13 years between my gastric surgery and P.A. diagnosis and there is no telling how long I was "running on empty" beforehand. If only my surgeon had known of the possible connection to P.A. my life could have been totally different.
The rest as they say is history and there is life after P.A. as long as I get my B12.
Thanks for sharing your experience clivealive.
What a tough time you've had - but you're here to tell the tale! And you've been resourceful and brave. I know it's hard for us all. Take care
Hi Sharon75. I'm so,sorry that you're having such a rough time at the moment (well, for a while really).
I've been reading through your past posts and was really heartened to hear about the haematologists advice to your GP so just wondering - have you seen the haematologist yet?
I also note that you are now self-injecting (with GP approval) on a weekly basis but are still having neurological symptoms and have asked the question in another post 'how much B12 is too much so...
Don't know if you or your GP are aware but the treatment regime (after the loading doses) for those with neurological symptoms is 1mg hydroxocobalamin every other day until no further improvement - and for some this takes many months.
So...perhaps you need more frequent B12 injections (every other day) as per all the guidelines for treating those with neurological symptoms?
Also - has your GP checked your folate levels: B12 and folate work together so if your folate levels are deficienct or low the body cannot utilise B12 properly. Worth asking your GP to check if is has not already been done.
As to your other chronic illnesses - are these under control and could some of your symptoms be due to these other illnesses?
And I know exactly what you mean about struggling at work on a minute by minute basis - I did it for several years and it was a nightmare. I just worked and slept and gave up completely on a social life. I did improve remarkably once the B12 deficency was eventually treated appropriately (initially my GP ignored the proven deficency and then under treated me (neuro symptoms were present) then stopped injections completely when my B12 levels were high on the ridiculous notion that B12 was toxic (what nonsense that is). I've been much better since starting to self-inject so that I can supplement the meagre rations available through my GP. (Also been diagnosed with a other autoimmune condition which complicates matters - but that's another story 😀).
So I guess I just really wanted to say that I know how you're feeling and really hope that you find some answers soon.
No idea how much you've managed to find out about B12 deficiency yet...I have links that I've just left for someone else so I'm going to add them at the bottom of this reply just in case there's anything there that might help you. Looks like a lot of I formation to read but don't be alarmed, most are only one page long...and they're all very interesting...and easy to read 😉.
And a final thought - have you had your thyroid checked (full thyroid panel to include TSH, FT3, FT4 and thyroid antibodies TPO and Tg - to,give true thyroid status)? Thyroid and B12 problems often go hand-in-hand and there are so many cross-over symptoms that it's sometimes difficult to distinguish between the two conditions.
Good luck and post again if you need any more help. Here come the links:
b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)
evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)
pernicious-anaemia-society.... (PAS Symptom Checklist)
stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)
onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)
stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)
stichtingb12tekort.nl/weten... (Testing B12 During Treatment)
stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)
stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
stichtingb12tekort.nl/weten.... (B12 and Intrinsic Factor)
gov.uk/drug-safety-update/n... (B12 & Nitrous Oxide Contraindicated)
stichtingb12tekort.nl/weten... (Methylmalonic Acid – MMA)
👍
Hi Foggyme
Thanks for your reply and taking the time to read through my posts ❤️
No not seen haemo yet. Still waiting on appt. I'm self injecting twice a week at mo - or at least my wonderful OH is. It's allowing me to 'function' but that's it. Work and bed is my life. And I know that's not a far cry for many of us.
Thanks for all the info too. Take care
Hi Sharon.
Firstly i know exactly how you are feeling as many of us reading your post have probably been right where you are at some point in our lives. It does get better!!
All i can say is that for me providing i have monthly shots and manage my limitations by not overdoing it i cope well with a full time and demanding job. It did take a long time til i was diagnosed and then get my levels up to where they needed to be and i constantly have to fight for monthly top ups but providing i have them I manage ok.
Good luck and hope you start to feel better soon x
Hi Sharon75 - sorry that you're struggling. I used to be a school teacher and although I'm now on the road to recovery via si, there's no way on earth I could possibly teach full time. And when I look back on the past two to three years, as my PA was obviously kicking in, I know I'd have been signed off sick. But I actually gave up teaching several years ago to become a full time writer.
However ... since having PA, I've found myself unable to write. The creative side of my brain has totally shut down, and even though I'm now feeling much better, I just can't write. I struggle to engage with reading other people's fiction too. I'm lucky that my husband can support us, but I really feel for everyone who has to work and struggles holding down their job. It must be a nightmare. And of course, apart from the fact that I desperately want to return to writing, I also feel guilty at not bringing any money in too.
Hi Kirsten
I feel for you so much! As a fellow writer (just hobby) my creativity has evaporated and no longer the concentration to read either. Keep at it and take care
Thanks, Sharon - let's hope we both rediscover our creativity! Good to know you're not alone, isn't it? I really feel I'm on the road to recovery, so hopefully it won't be too long now. xxx
I work full time in a really demanding but very sedentary job. A few months ago, I was really struggling, but generally now I have many more good days than bad. I self inject maybe twice a week. I have spacey days when my brain is all over the place and I can't stop yawning or think straight (that may be iron rather than B12 related), but my team are fantastic and very supportive and bear with me when I'm firing on fewer cylinders than usual!
Since starting the B12, I've felt so much more human again. Sending you hugs for hanging on in there when it's so tough! x
I can fully sympathise with your plight as I'm sure everyone else reading this can...
brief summary before I get to my point; it's taken two and a half years to diagnose most of my health issues because I have lived with severe unipolar depression since childhood and unfortunately a lot of physical symptoms get explained away with that. Almost three years ago I had a nervous breakdown, attributed to lots of factors but my job in social work and the 70 hour weeks didn't help. I left my job, moved back to my home town and recovered, and a year ago I returned to work in the same field but not management and only part time. As well, I finally got a diagnosis and treatment with my physical health (PA and Perianal Crohns)
HOWEVER and there is always a however, my job is physical and despite only being part time, I come home and go straight to bed. Even the ten minute walk there wipes me out. I have no quality of life whatsoever, certainly no social life and I struggle with my housework. I am single and 28, and my meagre part time wages pays my bills and leaves nothing over. If it were not for the wonderful family I have I would freeze and starve. I have tried every possible avenue to seek financial help, but I can't get any because I have no children and am under 35 (odd age) and I'm in the application process for PIP but I'm not holding out much hope.
The purpose of my reply was to just give you a heads up that accessing finance can be incredibly difficult if you will depend upon it (I don't know your circumstances obviously) and can add so much more strain and stress when you're already at an all time low.
Take care of yourself and I hope that things work out for you
Sorry to hear. How often do you inject and how much? It sounds like you're not getting enough B12 to help with your symptoms.
After my loading dose, I tried self injecting and ordered one box of twenty, and to be honest I didn't feel any difference whatsoever. As I said I have other health problems and I'm currently having some hefty infusions for the crohns so I am putting a lot down to that, but I'm sure my next injection should be due soon because I have very loud and clear tinnitus that's driving me mad
How often did you inject when you did it yourself? I hope you get better soon. The tinnitus sounds like one of the typical signs of B12 deficiency symptoms coming back.
I started off weekly, then I tried every other day until I ran out of ampuoles. I take folate and iron supplement and have a lot of dark greens. Got another guilt blood works to go and get done so I may ask to see the results and seek advice... you can do that can't you?
I believe it's the law you're allowed to see your results. My GP has been very nice with showing them to me. I've had another GP question it recently (when I couldn't see my own) and once the receptionist refused without GPs permission but I believe it's your legal right to see your own medical notes. In fact I've twice had printed off my whole medical history -- I had to pay £50 for printing but definitely got to see everything.
Hi Slimcat
I SI twice a week. It allows me to function only just. I'm too afraid to do more. Not sure why TBH - it's sore and hate needes
I hate needles too. I've ordered the 1500 mcg solution in 1ml liquid so I can put 3 mg in at one time (2 ampoules). Trying to currently do it every other day - I only just started on Monday. It seems like it has already made a difference. Maybe you could try something similar? Minimizing the actual needles but maximising the B12 you get to put in any one time.
My OH used to be a nurse. He suggested similar. I think I know I need more but going from 3 monthly to twice weekly feels a lot. Not sure what I'm scared of TBH - becoming dependant? Which I've learned you cannot !
Hi Bees88
I totality get the work-bed cycle. 😢
I also too suffer from mental illness and I feel one often feeds the other?! It's hard but I hope things improve. Take care
It's certainly hard to keep your chin up when your body is fighting against itself, but I have struggled for a long time to convince people that it's a different feeling... a different fatigue... a different pain, if you know what I mean. It's frustrating and tiring and I completely sympathise. I hope you find some relief soon.
And you too. I'm convinced (and hope) there's one thing that's being missed which will be the answer.
I also have endometriosis, interstitial cystitis, 'irritable bowel' - that umbrella bloomin term' and incontinence and chronic migraines. I'm convinced it's all linked
Bees88 - have you investigated fibromyalgia?
Endometriosis is enough to be going on with, let alone all the other things you poor thing! I am in no way medically trained but from what I understand of endo I would say that the disease is causing your other problems... I know that they looked at that to find out why my rectum is falling apart.
Funnily enough, the full bloods I'm to get done are to look at everything else before the referral for fibromyalgia at the hospital.
So many symptoms can overlap that it's hard to get the doctor to listen without feeling like a complete hypochondriac. With a previous GP who treated me from childhood I was persistently told that I was paranoid (when it turns out I wasn't) so I've got a bit of a complex. Add on the fact that I'm a bit over weight and mentally ill and it's bloody hard to advocate for yourself! But for two years, I ruled everything out one by one and kept a note of everything and the lifestyle changes.
Went off on a bit of a tangent there, but it's a lonely game this chronic illness thing and it's good to speak to other people who understand sometimes
You've hit the nail on the head! Where mental illness is a thing, it's always the get out clause.
My GP told me my gynae probs all in my head. Went private and surprise surprise - diagnosed confirmed. It's treated and mostly under control now but now I ALWAYS take someone with me to appointments so it's not so easy to be fobbed off! Good luck! Fibro not fun but I'm sure a 'reason' of some descripton will help.
I work in emergency department as nurse assistant and security I'm on my feet for hours doing lots of manual work.Have grand kids three days a week take them to school ect and have a farm.
I can only do all this because I took charge of my illness.
At my lowest point I wanted to die My body ached my mind was a fog.
Then one day I just got up and said Im fighting this.
I cant drink coffee anymore and very rarely touch alcohol.
My day starts with low intensity exercises and stretching then all my vitamins lol
I have a routine that works for me but if i miss it I know about it the next day.
I have reached a level with my B12 that works for me.And its over 1400
I keep a diary so I know what works and what levels I'm at.
I also found that electric stimulation pads were great for muscle pain.
I no longer have to use them and do yoga and kung fu now.
Exercise is essential to helping your body !
Keep searching what helps you don't give up
I have not worked full time since the double whammy of cancer treatment and a PA diagnosis 5 years ago. Never sure from one day to the next what is causing fatigue...long term side effects of chemo (which can cause fatigue 10 years after treatment) or PA. I've tried mightily to detect a pattern/trigger, but every time I think I've figured something out the next week the opposite will happen. I am good for weeks or months at a time, then I can feel the fog & fatigue return. Also find that my energy starts to lag mid-afternoon, but doesn't come back even after a rest. I eat well and exercise a lot, meditate, do yoga, blah blah blah. Currently I'm self-injecting every other week. I read more and more on these pages that people inject weekly or even more frequently...maybe I need to give that a go.
Thanks for asking this question . I was diognosed with pa 3 months ago , my doctor quickly gave me 6 loading injections over 2 weeks and ive just had 3 more , but am feeling no better . I work for myself (as a cleaner ) and im finding it difficult to continue . I worry that im not going to be able to continue and im the only bread winner .
Self injectors, how do you keep the needle upright 
Is it helpful to try to 'fight' fatigue?
How long before B12 injections start to work?
You are all very kind with your advise but since my bravery yesterday I am feeling very poorly today .
