If it's not too personal, I am curious as to if most of you are bedridden, or if you are able to work? I know that I would definitely not be able to go to work with the way I feel everyday. I'm curious as to if people are nauseous every morning when they wake up? What kind of abdominal pain they have? I SI EOD right now, I have terrible lower abdominal pain down by my bladder area that hurts to bend over and pick things up and swing legs forward to walk. My stomach burns and hurts all the time and I feel nauseous all the time. I have an upcoming GI appointment so they put me on omeprazole for now to get the acid to calm down. I know omeprazole can cause cancer of the stomach but I don't have any choice right now. My feet still hurt terribly bad and I'm very weak and I just really can't do much. Just all over body aches. Every decision I make is based on how tired and weak I am or how much pain I'm in.
I'm just curious as to how all of you get through your day? I feel like I have no life anymore. How do you all manage to have children and families and jobs? I empathize with all of you so much!! It must be so difficult just to get through a day. It amazes me that so many people can be suffering with this and that the docs just don't know any more than what they know
This is consuming my every thought my every move. Everything about my life is decided around this disease. My garden shed needed painting. It was on my to do list since before my cancer last year, so I managed to paint one side last week. It took all afternoon and I was shaking and weak the entire time. A few days later, after resting, I painted the trim. I still have three more sides to paint. This would have been a 4 hours job tops, not any more. I bought a riding lawnmower because I can't use a walk behind mower anymore. Just things like that. Definitely have to pace myself. Shopping is done in several small trips instead of one. I look at those riding carts and I tell myself not to use it, as that is an admission that I'm no longer the person I used to be.
Do any of you go out and enjoy yourselves? What kind of activities do you enjoy? have you gotten your life back? Do you hold down full-time jobs? I can't seem to think about anything else but this, which makes me bad company to be around because my mind just can't seem to focus on anything/one else. Plus I can't keep up with others so I decline invitations to go out to the mall or go anywhere for that matter. Don't want to be the center of attention with people asking if I'm ok all the time, showing them down. So I stay to myself. I've been pretty isolated because I just don't want to have to explain myself to anybody. It's just easier to lock myself away. Maybe if some of you shared the happy things that you do during the day, some of the activities you are able enjoy, it would be nice to know that you can actually be happy again. Thanks for sharing!!! Or maybe you're isolating yourself too. If so, I feel your pain. You're not alone in your aloneness.
Written by
EllaNore
To view profiles and participate in discussions please or .
It's like a bereavement your greiving as many of us are for loss of mobility, stamina and cognitive function. You are not alone but try and stay positive we are all differnt and heal at a different rate.
You managed to paint one side of your shed so well done you, we have pace ourselves or we pay the consequence which sets most of us back.
I suffer with various auto-immune disorders but even now the set backs I find very frustrating. I am now housebound so when on a low I take myself of on a journey by googling. I often take myself off somewhere nice which uplifts me or listen to some music which is uplifting.
There are various posts on here where some seem to have hurdled in there recovery higher than others. I was feeling a little better until a bout of shingles layed me low. At present I am struggling to regain a little strength but then I am used to the ups and downs of auto-immune conditions.
I think it depends on how soon the low B12 was detected and how soon it was treated. If there are any other complications then this will add to how well the person recover's. I havn't been active for years but then I have other ailments to contend with along side of the B12 issue.
Try and stay positive in mind if not in body I know only full well how you feel your not alone either there is always support on here when needed. 😘
Thank you Jillymo, it sounds like you've been dealing with this a really long time. I'm sorry that your housebound. Google sure is a lifesaver. So is YouTube and Pinterest, as I find ways to be creative. I started watercolor painting again and that really helps take my mind off of everythings. I hope you find little things to keep you busy too.
I'm not really sure how long I've been b12 deficient, but I truly believe Lupron killed my intrinsic factor 37 years ago. I've suffered from medical issues most me life and didn't know why. Now I do. So I'm not sure how much will get better. I just have to wait and see I guess. I guess I just feel I'm letting down people I care about. My friends and I opened an antique shop and I can't hold up my end of things now. They are left holding down the fort. 😔
Thank you so much for responding, Maybe we can all help each other inspire each other to find ways to spend our down times. Here's a little watercolor bird tutorial I found on you tube last night. Perhaps, you might find something like that fun to do. I'm not great but I don't care. It's therapeutic. Good luck Jillymo. Thank you 🥰
What a shame you are not able to keep up - I love antiques being one myself. I felt as you do and blamed myself for not being able to hold the fort, my husband gave little support. We didn't ask to be unwell so in reality there is no blame on our part we can only do what out ailing bodies will allow.
I have not had Lupron but been on Lansoprazole for years. All the signs of B12 deficiency were there but nobody picked up on it. I was prescribed folick acid by my heamatologist but things got very laxed what with covid.
I was aware in my late teens something was wrong ( now 71 ) but hey ho I was right ! I have seen so many consultants and spent hours in waiting rooms but they thought they knew best. How wrong they were.
I felt bitter at the years lost but bitterness is a burden init's self so no point in carrying it around. We carry on regardless and our sense of humour wil hopefully see us through.
I play games ect on occasions when my fuzzy head allows but water colour could be on my next to do list. 🎨🖌🖼
Oh Jillymo, I feel you so much. A lifetime of suffering. I'm so sorry. I have to hand it to all of us, we are amazing!! What we go through with doctors, the mental bullying by them. The years of questioning ourselves and our sanity. I would love to see any watercolor or creative outlet you make. Please share. Maybe something like that can help many of us. Id love to see what creative things others are doing!! Hugs to you! 🙂
Haha, it doesn't matter. Who cares. Be happy. I wrote a children's book in 1990. I have other ideas for stories, maybe that is another avenue. Do you write?
Sure do you only have to look at my posts on here.
I wouldn't say I am creative as such my joy came from caring for the elderly and those in need. I was one of those that would pick up those that had fallen in someway or another - some would say I were a soft touch but I didn't see it that way.
I just had a soft heart be it human or an animal I would have to care for it.
That's very sweet. I think empathetic people are the ones who tend to help others the most. People who know how it feels to be in that position. I love animals I've rescued them all of my life. I have three little Chihuahua dogs and four cats. All of them have been rescued. My one chihuahua has diabetes a heart murmur congestive heart failure and a collapsing trachea. He's 16 years old and he is a lot of work but he's my happy little guy. I give him insulin in the morning and at night. It makes it hard to go anywhere but since I'm not doing much these days anyway I guess that's okay. You sound like a loving, caring woman.
I think Jillymo makes a very good point about it being like a bereavement.
Getting used to life being different to the life you expected takes a special sort of courage.
There are forum members who find that they continue to improve for many years, once they get adequate treatment.
I improved for at least 8 years after starting treatment although the rate of improvement slowed after a couple of years. I am now at a point where I can enjoy life although have developed some other health issues recently.
I was very angry for years as my doctors refused to treat me and I had some unpleasant experiences but I decided to use the anger constructively and I try to help people on this forum and I spread the word about B12 deficiency among people I meet.
Yes, thank you. it is definitely a bereavement. You have to get over feelings of being a failure and all kinds of things. I'm so glad you found your way through it and that you put your efforts into helping others to help yourself. I'm sure you will always have to deal with this, I hope you found some peace. I do find that that helping others, helps me as well. And I have told everybody about B12 deficiency. I see people walking around in the store or at the doctor's office shuffling their little feet like they're walking in pain and I think to myself they need to check their B12. I will definitely seek to help others and encourage others as a way to help myself. Thank you sleepybunny. Take care.
I am saddened to read your story and how you are managing. No, I don’t work, I haven’t done for several years and I’m not even 50. Yesterday, any plans of leaving my home were scuppered by the call of nature which happens once in awhile.
My journey like most has been long. In 2020, I practically face planted at home. I hate fuss and am so used to illness and pain so my sofa and I were one. I spent 6 months being practically bed bound and could not coordinate my body. But I went with it. I read and read even though I had double vision. Here being brilliant and even did a part time neurology course. I have a thirst for knowledge which is what keeps me going.
I am battling small intestinal bacterial overgrowth and 2 weeks ago finally had a diagnosis of the valve between my small and large intestine not working properly causing excruciating pain after being upright for four hours. I have to lay down all afternoon and vigorously massage it. I study and meditate which I have done for over 20 years.
A couple of months ago, the place I normally buy gut microbiome tests had moved back to the States. So, I tried to a new company. The practitioner rang me to inform me that there was a supply problem and was curious about my medical history. When I told her my journey, she offered emotional therapy. I laughed and explained that I had qualifications in certain therapies, used to be involved in grief counselling and the first person you start with is yourself. So, one has emotional resilience before you extend to others.
As others, have said yes, you are mourning your former self. Our bodies and minds have been through a significant trauma. Both need to heal and it does so at its own pace. Yes, we have setbacks, we can overdo things and it does not do us any favours. Being realistic does help. I write a TO DO list on a white board. Brush teeth, wash face, get dressed, shower all those things require energy and are often forgotten about.
The shed will be painted when you are ready. I live near water and there’s also a park, I swim when I can. I’m naturally introverted and imaginative. I believe in gratitude, even for the smallest things - seeing a squirrel, a text from an understanding friend. They make me smile.
Like Sleepybunny, I want people to know how devastating an illness this can be. I prefer grassroots, so talking to people in an individual basis. I am a member of the Women’s Institute. I’ve only managed a few meetings but I joined specifically to spread the word. I have no problem giving a presentation to 2,000 people though.
Yes, it can be lonely at times with poor understanding from non fellow sufferers but sharing I feel is helpful. I love your blue bird picture. So, here is a picture of my hammock, on my private island with the blue waves and sun shining. Just giving me my daily break away from a mischievous body.
I am very moved by your journey. Wow, what a journey. I just had no idea this was what was making my life so hard for 37 years. I'm in awe that you and others have persevered through the hell that B12 deficiency is. Your difficult Journey gives me strength to carry on. I'm so sorry you've suffered so much. I'm amazed every day at how much our bodies can take and still keep on ticking. I love your hammock on your private Little Island it's the perfect little place. I love quiet little corners and quiet little nooks to sit all by yourself. Nature is the best thing. To go out and see the animals to see the squirrels. I have two white-tailed squirrels in my tree right now I've been here 5 years and this is the first year any of them were born with white tails. I have flowers all over my yard and I watch the butterflies and the bees. And I made a little corner in my and I put a little water feature there and the other day I had a little groundhog drinking out of my pond. The little devil nibbled down one of my brand new little plants, but that's okay I like to share my world with the animals. I think nature, animals and being out under the trees and in the mountains is what I miss the most. We all must try to find our happiness any chance we have. If I have a good few hours, I try to decide what do I want to do to spend this one good day that I have, because I know it won't last. And I always choose to put my dogs in the car and go for a drive and sit and watch nature. It is my lifeline. Without it I would surely not exist.
You sound like a wonderful person. Thank you for telling me your powerful story. It helps so much. Yes, just getting ready to go shopping, I'm already exhausted from brushing my teeth, showering. Etc. I hear you. It sounds like you found an outlet for your frustrations though by immersing yourself in knowledge. I'm so glad. I don't think I've ever read so much medical information! Haha. Big hugs Enjoy your private island. 😊 thank you for sharing your story.
I hope it's ok if i ask you a couple of things. This bowl problem you have, how does that come about? Are they going to fix it for you? I had adhesion removal from my colon, intestines..... well from every organ, I have had colon, or intestinal problems for 37 years. The pain is sometimes unbearable. I'm always told IBS. If anything it's spastic colon but I know that it has to do with the B12 thing. My stomach bloats to 9 months pregnant. But it's hard to tell because I'm a big person. And people probably just think I'm fat but under my fat is a very hard firm bloated belly and I haven't even been able to put pants on in 2 weeks. Is that similar to what you have? Are they going to fix your valve? What can be done to help you? Thank you!!
I am so sorry to read and thank you for feeling like you can be open with me. So, ICV (ileocaecal valve dysfunction) it’s very common in coeliac disease (which took 29 years to diagnose) and small intestinal bacterial overgrowth. Although, I believe because it is a sphincter it is also controlled by the nervous system. We know lack of vitamin B12 influences how nerves and muscles work so that may also have had some influence.
Poor you and your adhesions, sounds horrible. IBS is an umbrella term for something is wrong but I feel due to lack of funding and lack of research this will remain. I agree that you know your body best so therefore, spastic colon most probably is appropriate. Plus, due to lack of vitamin B12, slow transit can occur as peristalsis and the migrating motor complex (both rhythmic waves for moving food along the digestive tract) can be affected.
Regardless of your weight, bloating and pain can be hideous. I too look pregnant from 11 a.m.
With regards to actual diagnosis, 2 private gastroenterologists weren’t able to identify it, nor a surgeon and a delightful radiologist refused to scan me. So, I went old school, a private osteopath !! They rely on their hands and they use stethoscopes to listen to sounds the body should make. Then they use manipulation and other techniques to try and make things work properly. I do yoga, do some reflexology to stimulate the bowel and had some acupuncture.
If you read my bio, I’m an ex health professional who prefers more natural methods. There is always a time and place for surgery but my personal preference is I avoid it. In medical terms it’s called conservative management.
Thanks for being so open. So sorry for all you are living with. I actually thought I had asked that question in a DM. Sorry about that. But I guess it is good for others who might find your answer helpful. When you talk about things moving slowly through the GI tract, it is funny you say that because they always ask me if I am constipated or have diarrhea, and my answer is. neither, but things move very slowly down there. It takes forever to process my food. Very slow metabolism. But they never put 2 and 2 together. So maybe now with b12 deficiency, they will be more open to realizing something isn't working right. But I do think the b12 has sped things up a bit. Things do seem to be working a little better. it's painful but things seem to be waking up. Good and bad.
You should be proud of what you taught yourself. I think illness leads us to being our own doctors and we learn so much. We specialize in what is wrong with us, where doctors have to know a little bit about a lot of stuff. PA is probably not high on the list. But it should be. I think b12 is the cause of so many lifelong illnesses that aren't found until we are older. I swear, I don't care how young someone is, if they are showing signs, I will spread the word. Something so simple to find and yet no one looks for it. I find that crazy!! Maybe that is their way of letting the population die off naturally. Then there are the warriors like us who do our own investigating and are our own advocates. We won't go quietly! LOL Thanks so much for being so open. I appreciate it very much!!
I was diagnosed with P.A in 2016, although I had had symptoms for many years before this. To start with, I was too tired and weak to do much. I quickly started to self inject, as it was obvious that one jab every three months wasn't going to work. I now inject weekly.
To start with, even a walk around the block had me tired out for the rest of the day. I very slowly increased the amount of exercise that I did and soon found that I could do more. My husband would encourage me to go for short walks even when I was feeling very tired.
Fast forward to now, and I can walk four miles to pick up my Granddaughter, push her back up the hill, and look after her for the day - she's 2 years old and never stops. OK, I get tired by the end of the day, and start talking wibblish, as my daughter would say, but after a rest and a night's sleep, I'm ready to go again.
When I think back to how poorly I was, and what I am now capable of now, its like night and day.
Don't get me wrong, I still have days where all I want to do is sit on the sofa because I'm so tired, achy, spaced out and tingly, but those days are getting less and less, thankfully
Wow topazrat, that is such encouraging news!! Wow. I look forward to feeling that way soon. Thanks so much! Good luck to you. I talk jibberish when I'm tired too. I'm sure people think what the heck is wrong with her. Lolol
I took the Granddaughter to the playground the other week and she kept running in front of the swings. I stopped her and said stop running in front of the SLIDE, you might get bonked. The chap who was pushing his little one on the swing looked at me like I was from the planet Zog 😂
Swing/slide, guttering/scaffolding, leggings/trousers, strawberries/tomato, cucumber/cauliflower, they're all interchangeable, right? 😀
I know exactly how you feel and it’s not good. I was I’ll health retired at 58 and have struggled to have a “life” since. I am constantly in pain, mentally and physically exhausted and occasions I should look forward to I now consider with dread.I am awaiting major surgery and am down about that too as I know it will be a horrendously painful recovery process.
In saying all that though, when a good day comes along, (they do from time to time), I catch a glimpse of the old me and make the very best of it. Like many of the people on here, pernicious anaemia is not my only auto immune condition.
I lost my Mum last year and my very best and closest friend of sixty years this March to skin cancer. At least I’m still here to see my Grandchildren grow up even if I cannot play with them as I’d like to.
I have found that in adversity, it pays to consider what we have to be grateful for. In my case I have a loving family, a fab partner and a comfortable home that’s warm and a fridge full of food. The NHS provides me with medicines that cost a fortune which allow me to be able to move and walk. I have a cranky thirteen year old Border Terrier who still makes me laugh every day. Simple pleasures mean so much to me now. I hope you find some peace very soon x
Good morning Twaddletop, thank you so much for sharing your story. I'm so sorry for your losses. Your mother and very best friend, that is so hard. And the loss of your old self. Yes, we do have to count our blessings. It sounds like you have some good support at home. Having people who care goes a long way in our struggle for understanding us. I can see how you would be scared about your surgery. That is a huge thing to deal with. How will it go? Will I be better afterwards? How long will it take to recover, and knowing it will be a painful recovery, takes a certain mind set to deal with. I wish you all the best. Please let us know when you have your surgery so we can all send good thoughts out to the universe for you. Hugs to you.
Thank you for your kind reply EllaNore.I have had many surgeries over the years but this one coming up is a doozy. I have begun to have tremors as psoriatic arthritis has caused bone spurs to form inside my spinal canal. When they touch nerves I tremor uncontrollably. It’s happening more and more through the night so I’m getting little sleep.
My neurosurgeon is a lovely Greek man who is very gentle and reassuring. He intends to remove the spurs from the spinal canal and cage all the herniated discs in my neck and cervical spine. I’m already full of pins and plates so that doesn’t phase me as much as the fact I will be able to hear the pins, plates etc in my neck when I move it. For some reason this is freaking me out and after all these years, that doesn’t happen often. I have osteoporosis also and break bits of myself with little effort required. I have fractured both my cervical and lumber spine , so the hope is that this procedure may halt further deterioration.
I am frankly quite surprised at how much this forthcoming op. has rattled me. Maybe it’s a fear that my luck is going to run out, I’m not certain. I have a DNR in place should anything catastrophic occur. I’m not so much afraid of death as surviving in some kind of quadriplegic state. I think I may be a little depressed as I know things that I can normally brush off are getting to me at present.
Like many in this forum I’ve been struggling with health issues for many years. I’m getting on a bit now, I’m 67 in a few weeks time. It’s harder to bounce back when you’re on your way to over the hill 😊
I'm 64 now - and not looking at that hill at all. You have had such a difficult time of it. It is understandable that you are apprehensive about this upcoming operation and the outcome. Who wouldn't be ?
Yet here you are, offering advice and sympathy - engaging with others, helping them face their own fears.
Losing your mum and best friend last year - big losses which cut into your support network in a huge way and alone, enough to bring on depression. Luckily, you have counted your blessings aloud - and there are many.
Thank you CherylclaireI decided we really needed a break this year, so I decided to phone the hospital to find out if they could give me an approximate date for surgery. The answer was slightly alarming, all elective surgeries remain suspended and neurosurgery struggle to find beds for the emergencies they are compelled to admit. There are people on the waiting list since 2019 for surgeries similar to the one I require.
I think we’ll be okay booking a holiday this year and next by the sounds of things. They did say that if the tremors worsened or I find myself unable to walk to contact them. I frankly don’t see the point at present x
What an awful situation the NHS has been left in. Not a healthy service pre-covid, now absolutely desperate. Have the holiday - hopefully it will do you good.
Even that is not quite as easy as it once was, is it ?
You have a fridge full of food, I have a fridge full of B12.
You are in a bad place - a place I know well. Most of us here will remember it. Craving isolation, of necessity -not getting pleasure from it more just a relief, everything becoming a chore or a test to get through, exhaustion being practically all I felt.
Crying a lot, arguing with strangers, mood-swings - not wanting people I knew to see me. Having to have my brain tell my leg to move, to take one step forward, when all energy drained.
Affected by noise, bright lights, movements, meaning that I could not go anywhere busy. Waking up with stiff painful feet, abdominal/lower back pain.
Unable to lean forward without pain -so cleaning the bath, hoovering, mowing out of the question.
My arms would shake with the effort of hanging decorations on the Christmas tree so had to do it in stages over the course of a day or two (so really don't know how you managed to paint the shed), and I found it difficult to cook because legs would shake in the same way from standing at the worktop.
I did not have nausea and burning stomach, but had daily diarrhoea.
I was off sick for a long time (well over a year) and then put on a phased return.
My employers tried to accommodate my needs, and so GP/ consultant appointments and tests were not a problem.
I was struggling physically and with both memory and cognitive ability.
I was having a lot of trouble even with standing up straight, I was sighing throughout meetings, I was distracted often by sensory overload - peripheral movements etc.
I was, for the main part, pretending.
I had become the assistant to my own previous assistant, and recognised that I was not going to be able to get my job back.
During lockdown, while on furlough, we were offered the chance of accepting voluntary redundancy. I took it. I did not feel that there was any real choice.
I never returned to work and I am not the same as I was before I became B12 deficient.
BUT ..... I have been able to evaluate what is important to me, and concentrate on enabling these things to happen. Listening to my body - something I never had to do, as I took my health and strength for granted. I have given up promising anything - I still cannot always second-guess a good day/ bad day.
I have been able to spend more time on things that I enjoy: painting, drawing, gardening, seeing family. People who will accept who I am, not expect me to pretend to be as I was.
Far too exhausting.
In the main, I am able to enjoy my life, although the limits are sometimes frustrating. Making the most of good days while accepting a few slow days will follow, or trying to avoid pushing my luck on those good days.... but good days will come and will keep coming.
When at my worst, I felt as if I was never going to have anything beyond a lonely struggle. Wrong.
At one point, I thought there must be something they've all missed.
Wrong again.
An ENT specialist saw me back in 2017 - and told me that I had to keep injecting every other day, that I must be persistant and that I would get better, but it would take a very long time. Not to give up.
I am still making improvements and I'm happy. There's more.
I am easily startled too. I wear earplugs constantly, freak out when I see bright lights or movement. I freeze in place when someone is near me until they walk on by me. I have nausea off and on. After working all day, go to gym, but can only work out about 30 minutes and usually just have enough energy to do one more thing before going to bed.
I feel now as though this symptom might have been to do with balance (and dizziness caused). A heavy reliance on using verticality of objects/ others to ensure your own. So when something I was relying on behaved "wrongly", it threw me a bit. Not that this was a conscious action- and easier to understand retrospectively. Made me feel nauseous and dizzy.
So for instance, walking past a bus-stop and the bus suddenly starts slowly moving off. Clothes rails that, on touching, sway because they are attached by chains from the ceiling.
A sudden readjustment required unexpectedly.
Does this sound like a possibility ?
Mine did get much better over time.
Good that you are able to work and go to the gym. Take care not to overdo it.
Yes, that is a symptom. I play video games and I can no longer play certain ones because the movement makes me very nauseous. So badly that I end up in bed for days with vertigo. If I turn to fast, dizzy nauseous, vertigo is definitely a symptom of PA. Hold on to walls and use crutches and a walker as my legs are so weak and painful. I'm in getting an MRI right now on my abdomen. Had one yesterday on my lumbar. Good luck to you.
I remember, as I was improving, going to see the latest Planet of the Apes film at the pictures and spending most of the time with my head spinning because of sitting in the centre and trying to concentrate on fast-moving battle scenes to left and right. One of my first proper treats: a weekday matinee. A mistake.Later, tried I, Daniel Blake - much easier pace. Really felt like an achievement.
And now, I don't get dizzy at all - unless I have my eyes shut, so turning over in bed for instance.
Time, a lot of time. It can feel like life will never be anything but a struggle. I didn't see much improvement for over two years with EOD injections - but then, gradually, things looking up: bloods: folate and ferritin more stable, then MMA down into normal range.... things changing.
Lower abdominal and left-hand lower back pain, daily diarrhoea and fatigue were the problems I first took to my doctor in 2015. Bowel cancer was the first thing they ruled out, on a two-week pathway. B12 deficiency was discovered about a year later.
Sorry to hear that your life is so hard. Glad that investigations continue for you.
Regaining as much as you can of your previous life has to be the goal - for you and for the medical professionals in charge of your care.
I'm so sorry. That must be terrible. I too get peripheral shadow movements that make me flinch. Very dizzy, nauseous, tired and weak. I hope you're symptoms get better. It can't be easy to go to work everyday. Good luck to you. Take care
I don't get dizzy anymore, just freeze in place for some weird reason. My husband will turn around and say are you coming, but I have to just wait until no one is walking near me.
Sorry I have not responded sooner. I had a lot of appoints and just too tired to think. Reading your story, I felt like I had written it. I don't even know what to say. We all have so many symptoms, most we all seem to share, but some I don't. It is all so crazy how much is related to PA. Yes!, Bright light especially if it is peeking through a small opening in the closed drapes, it is like a laser beam to me. And noise really irritates me. I can not stand to listen to the sports guy, too much random noise. The weather report can do that too, but not as bad. I get overwhelmed, confused and very agitated. And too much activity going on around me, I get overwhelmed. These things were never an issue in the past. It is a strange symptom but I feel it is related. Anyway, It sounds like you may have gotten yourself into a place where you can maintain fairly well. Ya, predicting how your going to feel each day is impossible. I make no promises either. I had to take leave from the antique store. I feel like I let everyone down. It is a lot of pressure to try and be normal and be sociable. I can't do it. I wrote to everyone today, explaining that I will be taking a break for a few months etc. If I just tell everyone upfront, I won't have to live with all the pressure of saying NO to every invitation. Thank you for telling me your story and for the light at the end of the tunnel. I wish you a good hour, a good day, a good week. 🌺I will hang in there and hope things get better soon.
Really, I remember being in the library up the road, shouting at people for being too noisy - the same on the bus or tube. I knew it must be me, not them, but couldn't bear it and felt like I was going to break into pieces. "Let me think, please just let me think" was playing over on a loop inside my head. No way I could see people who had known me previously. Not then.
I did not think it was possible that this would get better, that this could all be due to a vitamin deficiency. But it did and it was. Keep going, don't feel guilty about what you cannot do, don't push your luck when you're having a good day, allow yourself to recover.
That was a good idea to let people know that you cannot currently manage as you once did.
You are still you. Remember that. Plenty of us here to remind you.
As for me, I'm already having a good week - went to the seaside for the day on Monday.
London is really not the place to be when it's 40 degrees.
So nice to know I'm not alone in any of this. Especially, in the weird symptoms that no one would understand but us. Thank you so much. I'm so glad you got to the sea and your week had been good. I heard it is record heat in the UK. Be safe. 🧡
Nausea is a big problem for me. In the beginning,it was constant. After 2 years of weekly injections I increased to eod and I feel better than I have in a long time. Less nausea, alittle more energy but nowhere close to my previous self. I haven't worked in 3 years. I'm soon to be 59 yrs old. I have been a nurse for 40 yrs and have given hundreds of b12 injections but I never realized the impact a deficiency could have on a person. It has been a life changing experience for me. Not only physically but mentally and emotionally as well. This forum saved me. I truly believe that I would be dead or bedbound without everyone here and their input. Good luck on your ride. It's a roller coaster.
Thank you Nana321! I'm sorry for your struggles. Yes, nausea everyday and dizzy. I'm so glad you got it somewhat under control. I find that the people who used to be nurses or doctors who get this are some of the best supporters, because they've been in the medical field their whole lives, they've seen the struggles, but they didn't know the impact until they got it themselves. Plus they know the ropes patients have to jump through for their Eod jabs. Imagine all the docs who"think" they know how this feels, but don't. They can't empathize. I'm so sorry you are unable to work. A nurse who knows how it feels would be such an asset to patients. I wish you the best.
Hi Eleanor, I can relate to how you feel. I have had stomach pain and nausea on and off for 20 years along with fatigue ,muscle and bone pain.this was all following a hysterectomy where they found lots of adhesions. It was only 2 years ago that the gp said my B12 was dropping. It was 165,I felt dreadful. He said I could have 3 monthly injections but as it wasn't that low I didn't need loading doses and not to focus on b12 as the answer!!! The injections have helped with fatigue so I can do more than I could but still struggle with gastric problems. I have had investigations but it only showed gastritis and a small hernia so was only offered omeprozole and domperidone for nausea .
Thanks to the forum I ordered my own supplies of b12 from Germany and if things get bad I can self inject.
I'm so sorry for your pain and suffering Mrsmr. Can I ask you if perhaps they put you on Lupron or another GnRh medicine to put you into menopause with the endo? I am just curious as I feel that is what broke me. It seems many women with PA seem to also have had endo and adhesions. I found out yesterday when I got my ampoules, that I had not been administering enough B12 to myself. I was only giving myself 1/4 of a vile. So I am going to up it today and see if I can walk better. I hope you find a dosage and schedule that keeps you feeling better. Thank you for sharing your story. It sure helps and good luck.
Thanks Eleanor, no I wasn't put on any meds as they only found the adhesions when they operated. I was told it took a few hours to separate them all out, no wonder I was in so much pain!! Hope all goes well for you with your increased dose of b12.x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How long did it take before your neuropathy had healed.
How long before your improvement from b12 shots plateaued? 
How Bad Have Your Symptoms Been With B12 Deficiency?
