Hi everyone, I developed Pernicious anaemia about a year ago, after having an severe episode of pancreatitis and subsequent surgery. I tried to continue to work but fatigue, irrational behaviour and pain got the better of me and I’ve had to retire. I have B12 injections every 6 weeks now.
I am finding myself incredibly tired and fatigued. I used to be a 5 day a week gym user, now I can hardly walk and feel sleepy at the time. Apart from B12 my blood tests are all good.
Are these typical symptoms? Can I expect to better (or worse)? Is there any way to be more active or exercise?
Thank you.
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dch252
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Sounds like your body had a right bashing. Have you tried more frequent b12 injections. ? The only time I went 6 weeks my symptoms git worse.
We're the 6 weekly intervals keeping your symptoms at bay before you got pacreatitis?
I would only aim for short walks at present. Rest and let your body recover. As your bloods okay ...does that mean your iron and vitamins were checked too? Hope you feeling a bit better each day
I had acute pancreatitis plus septic shock etc that resulted in need for daily insulin injections ...presume you have been tested for diabetes too ( as well as ferritin, folate, vit D), sounds like you need more frequent b12 injections possibly. I’m in continuous fatigue and aching and know it’s a vicious circle....force yourself to walk 5-10,000 steps daily but then asleep for rest of the day, or stay awake but do absolutely nothing...while it is summer I am going down walking when possible route in the hope that I do regain some health, but it is rather 1 step forward , 2 steps back at times. Are your bloods ‘good’ or just ‘in range’? I also had a fibromyalgia diagnosis a couple of years after the pancreatitis.
No, not dying, you're just very ill, dch252 . Life-changing and initially frightening for most, though. It's going to take time, this.
I have not had a PA diagnosis but do have B12 deficiency.
Needing to sleep a lot is almost impossible to fight off, so try not to have to do that.
What I mean is, if you go supermarket shopping and end up feeling yawny, confused, unable to make decisions or even remember what aisle you have been up already and dizzy with all the head movements and noise, lights, movement around you, you probably need to allow for a 3 hr nap once you've unpacked the shopping. I used to throw myself onto the sofa, throw my glasses onto the table and sleep for at least that long.
Probably a rubbish example, since most people probably are shopping online and getting it delivered now, but you can transfer this feeling to most other activities.
Accept that you need to take it easy and allow time to heal you for now. Don't accept getting worse: it could mean that you need more frequent injections. I certainly think it's worth tracking that: if you list your symptoms, then keep a daily record of frequency and severity of each, you might pick up on patterns: deterioration/ improvements/ disappearance (hopefully) of symptoms. Can help with GPs or consultants later too.
This is by no means an easy or straightforward condition, and will have aspects specific to you alone, despite common complaints and experiences. Look here for people who seem most like you in terms of symptoms: this might help you too. What do they do, what works for them ?
My ferritin and folate levels did not go out of range, but were low-end. When my hair was falling out and gums bleeding, GP put me on a 3-month supplement course of both. Symptoms went, levels upped. Then dropped again, symptoms returned..... it took a while, and quite a bit of daily supplementing, despite a diet with plenty of B12, folic acid and iron, to bring these levels up again. GP keeps a check on folate and ferritin levels, FBC and thyroid levels, NEVER b12 now as it would be pointless and not concerning anyway.
I also get vitamin D3 on prescription, since it was discovered that I now have osteoporosis of the spine.
So take a look at other results especially for folate and ferritin: low-range may not get noticed/ treated.
I was advised on here to aim for top third of both these ranges for optimum health if B12 deficient, but keep regular check on levels as folate and ferritin (especially) can adversely get too high.
I had 15 months off work, but returned and am now working 2 days a week. Some of my symptoms have gone, some have improved, some waiver, some still around; not finished yet though ! You can become more active again, but you're going to need to listen carefully to your body and accept limits for now.
There are people here that can help you, so stay in touch. Best wishes.
People here are so sympathetic because only those who have experienced it know how bad it is to be able to feel like you are slowly dying - it gives us a common factor in a world where no one else can understand what it's like!
With enough B12 and supporting supplements you will feel a lot better.
I feel like that sometimes, slowly dying..Have you thought of graded exercise? It worked a treat for me when I couldn't walk for 3 yrs and had only 10 mins energy a day .
Find a baseline..Slowly add a minute or 2 to the amount of activity and build up daily. If it knocks you for 6..go back to before it did and try to increase a little slower
I’m sorry to hear your struggles. I don’t have a diagnosis but am having private injections weekly. I can’t get through a week yet. I can’t imagine what I would be like trying to last 6 weeks. If I were you I would be looking for more frequent injections.
Even though I feel the best I've felt in years mentally after regular Injections, i think the most frustrating part for me is being unable to physically do what I used to take for granted. And that must be very hard for you to come to terms with when you used to visit the gym 5 times per week.
I hear a lot of people who say they're constantly tired no matter how much sleep they get & just want to go back to sleep, it's the other way around with me, I'm lucky if I sleep 4-5 hours now, but I know that PA causes sleep problems also.
I think the key thing is to do little things when able to without overdoing it & rest when your body tells you to rest.
It's still early days in your diagnosis, as is mine & with PA things can seem to get worse before better.
Most of my symptoms have gone, some remain, some improving. Unfortunately that is the rollercoaster ride we're on all with this "Forgotten Disease" this place is full of amazing, experienced, helpful people so you've come to the right place.
The best ‘medication’ I received from a GP once was a 14 day certificate to refrain from work. He stipulated that it didn’t mean I should tidy the house, do the ironing or clear the garden, he made clear that I should take it easy, take a stroll, read a book or watch a movie whilst dozing on the sofa.....ie REST! The best medicine is to give your body a chance to heal and increase your activity slowly. As Nackapan said, your body has had ‘a right bashing’. One step at a time.
I echo everyone's comments here. 6 month or so I remember telling someone to ride the storm and they will feel better. PA is still relatively new to me, and I am now feeling quite ill again, but no reason I can pin point, so trying a few different things that worked before. Here am I am riding the storm again...it will pass. I have learned quickly that It's a very complex auto immune disease and many people underestimate or don't remotely understand...hence the support and excellent knowledge on this site is vital to me. Wishing you all the best as you ride the intermittent storms xx
I've felt like this so I empathise totally. Just to encourage you: I had a dip recently which I'm now coming out of and my energy is slowly coming back, however I am self injecting.
My wife was suffering acute fatigue, irrational behavior, and being tearful which alarmed and concerned me massively so I resolved to get a letter to her Doctor ASAP.
I told him my concerns and supplied him with info which I got from this site. I asked if her injections could be given, instead of three monthly, two monthly. I also asked if she could be given folate to see if that would improve her symptoms. What they did was take blood to check her thyroid and to see if she had anemia; plus, her folate level. Surprisingly, everything came back as normal!
Before my letter, when my wife ask to have her injections earlier she was refused. This time her Doctor acquiesced, making the interval between inoculations eight weeks instead of twelve weeks...this will start in July 2019. I felt good about that!
Although my wife's folate level was fine they did agree that taking an additional 5 mg would be okay.
Time will tell if there will be improvement. And, if there is not, we cannot stop because living with such symptoms is "hell, mentally & physically".
The doctor never answered everything I asked and wrote back to my wife rather than myself which I am not too pleased about. I prefer things in writing so you can take your time going over things. When one talks one can misinterpret and forget things.
Does anyone know if a doctor can refuse communicating by letter or email?
Wishing you all energy and calm, tranquil times! Blessings too!
I believe, due to data protection and patient confidentiality the Dr was absolutely right to reply to your wife, and not yourself. It's great however that you understand and are supporting her. Hope she feels better soon x
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