Does anyone have any POSITIVE stories of healing after reversing out please?
I am in the absolute thick of it, and need something to hold me up mentally. So seeking positive stories here, because I need something mentally right now to cope. I'm sure I'm not the only one.
I am having horrible reversing out symptoms, and new ones I didn't have before. Inc blurred vision, internal vibrations, worse joints, skull base crunching and pain. All my joints crunched. Plus the rest. Getting out of bed is hard, and I cry every single day.
5 weeks in.
Can someone, anyone, tell me of being in hell during reversing out, but then coming out the others side, and being able to function again; healing 🙏🏼🙏🏼🙏🏼?
Sending ❤️
S
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Suffering_sunny
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Ah, yes, I remember thinking I was dying. I was pretty much sat on the sofa all day doing the bare minimum for a while. That was about eight years ago now, I think.
Once I started coming out of the other side, I started just doing little things, maybe a walk up the street, then round the block, slowly doing a little more each day. But not too much, or you end up getting over tired.
Today, I've not long got back from a 4 mile walk along The Ridgeway - it certainly blew away the cobwebs! 🪁
I look after my two Grandchildren for a few days a week, who are four and one, so I'm on my feet all day, running around after them. OK, I still get tired at the end of the day, but who wouldn't, especially when you're over 60.
What I can do now is like the difference between night and day. Instead of just existing, I'm living life to the full, and you will be too, before you know it. Just take it slowly, day by day and don't be tempted to do too much too soon - know your limits 😊
It means so much to me, and gives me hope at a point where I have been grappling with times where intrusive thoughts of hoplessness creep in due to how hard treatment is on my body right now xx
I only started SI this week so I'm at the beginning of my recovery journey and can't advise...but I just wanted to say "hang in there" and take some reassurance from others than things will get better. Sounds like you are having a right time ❤️
Gosh, I so understand how u are feeling. My reversing out seemed to last forever, I’m a year and half into this and I still have the odd symptoms that have not gone yet but are a whole lot better! My most frightening one was the internal tremors, shaking in my organs and legs. I really felt like I was dying sometimes! I know that’s dramatic but it was scary. My mental health was at an all time low. Severe anxiety and insomnia. But I have to say that the anxiety is way better and so are the internal tremors. The only thing I still have from time to time are some vibrations in my legs. I was off work for a year! But am back full time now and have energy. U will get through this. Keep telling yourself that this is only a phase and u will come out the other side. U really will. Keep going! You are healing your body bit by bit.
When I have symptoms now I tell myself I'm healing and healing is difficult. I'm always amazed that my body knows what it's doing. It always does. I had months of reversing out after SI ing B12 and then again recently after a ferritin infusion. When there's any long term deficiency I believe replacement brings worsening.
I think you hit the nail on the head - treating a deficiency often creates a worsening in symptoms whereas masking a symptom ( ie with a pain killer or anti-depressant) gives the impression of improvement- although we all know that in the long-term this is not the case.
True recovery is not an easy path to walk but in my view it is one well worth walking.
Such encouraging stories. I'm now 4 months in with much improvement in cramps, spasms, fatigue, and migraines, but injections have added many new symptoms that are still taking time to resolve - tinnitus, agonising shin pain, dreadful stomach pain and those negative, hopeless thought patterns that were never me. They are the worst! But encouraged by this group I have kept notes most days, and can see how things are changing for the better even if slowly. These first few weeks are really hard but we have no choice if we want to heal. Stay strong and keep going xx
You are so right apart from all the support from this forum, being able to look back on my notes when I was feeling low and helpless was a huge benefit. It’s hard for us to see progress on a day to day basis but it’s there!!
hello, yes when I went through what is termed Reversing Out it was grim, emotionally/mentally it was like being in a black pit and hard to keep going.
I just doggedly kept injecting, remembering progress I had made before. I eventually resurfaced. I've noticed that when some part is healing it is worse.
Now, nearly a year in I continue to make progress.
Very insightful post “I've noticed that when some part is healing it is worse.”
I will hold onto this thought as a beacon of hope as my lower back is extremely painful. I had it checked by my chiropractor and structurally and mechanically there is nothing wrong - but it’s stiff and achy but not all the time. I will remember your observation when it gets me down.
I've had 2 MRIs for back issues, and my pain never seemed proportionate to the mild and typical physical changes to the spine and hips. Pain almost went during loading doses, sadly not since! But interestingly, I now believe 90% of it is nerve related not mechanical, so I'm less fearful of injuring it and it seems to be behaving better. I also told the NHS Musculoskeletal service I've seen twice that my crippling muscle spasms and lack of lower leg reflexes are a symptom of B12 deficiency, and to please consider that when they next see someone with similar symptoms!
Yes, I had 2 MRIs through them about 2 years apart. The second was last November when I started to experience an increase in what I now realise were B12 related lower leg symptoms, but which we all thought were due to worsening nerve compression. Turns out the nerve was LESS compressed in the second scan!
Ahhh, I didn't know they could refer for MRIs, interesting. So they don't have scanners etc of their own? That's what I was wondering about as I thought they were limited to physiotherapy.
Yes they can refer, in fact for musculoskeletal stuff that now seems the only pathway unless your gp puts you on the 2 week urgent referral for suspected bad stuff. I have seen 2 different physios at 2 different clinics and interestingly one was significantly better than the other.
Did your GP know they could refer for MRIs before sending you to MSK? I'm trying to figure out how well informed my GP is as I asked mine about MSK & imaging.
thank you for your post. as I continue to heal this is my 6th month and I'm getting ready to get injections hopefully next week, I've been on oral methyl b12 liquid. It gave me waking up symptoms at first really bad pain my feet shins mentally I was all over the place with horible anxiety and that has gotten so much better, I'm hoping that I can handle the injections and I'm not sure on the dosage yet what I will face but hopefully I will be strong enough. My stomach got really bad over the last 4 to 5 years and weight loss from not knowing it was b12 deficiency I went to all kinds of specialist for see why I was all messed up in pain and loosing weight, I'm slowly introducing more foods that I can eat as I heal. but when you talked about your back pain, that is where mine is mostly now in my back and digestive nerves. as I started to take other suppliments like vit d, b complex , calcium magnesium, I also was deficient in them I have to split them up during the day for the waking up symptoms when I take them. but the pain in random places and my back come and go. also by evening after taking all the cofactors I'm really buzzing a lot in my back and tight muscles. I pray for total healing for us all.
You appear open minded to the challenges of finding your healing path. All I can say is listen and get to know your body, do your research and trust your instincts. Sadly our condition is outside the expertise of most medics but that’s not to say we can’t heal ourselves.
thank you for your reply😄 yes I'm trying and praying always but I get the mind games trying to get me down off and on at times it's very discouraging and yes scary. but I keep reading everyones struggles. and they have helped me greatly knowing there will be an end to this and we will be able to look behind at these days. thank you.
Just wanted to send you my best wishes - I am only just beginning the process and also have the neck crunches and sharp jabs of pain, internal vibrations - so tired as well as emotional. Knowing that so many have been there before me and are there with me helps enormously, and I know now that my body really needed this. There is light at the end of the tunnel and we will get there. Take it gently and be kind to yourself x
I agree. The forums have been a lifeline for me and clearly for many others too. Taking some control back for ourselves is hugely empowering. Best wishes and thank you.
I completely empathise with you Suffering _sunny, the reversing out is unbearable. I too experienced significant pain and discomfort once I began SC self injections. I was already severely B12 deficient with the medical protocol of one injection every three months, having difficulty walking, neuropathy, insomnia, extreme fatigue and unable to cope with life in general. I cried myself to sleep every night questioning if and when I would experience any improvement in my life. I was a fraction of my former self and feared I would never be that person again. Fast forward a year and a half, I’m still healing slowly but surely. I will continue with SC B12 daily with an overhaul of my health, especially with what I put in my body. Stay committed to the process, the reversing out takes time but, down the line you will be rewarded with improved health, mental clarity and inner peace. You will eventually see the light at the end of the tunnel. Just remember that you will feel worse before you feel better as this is what many people have experienced on the PA and B12 deficiency journey. Warm hugs to you, we all understand what you’re going through here.🤗🤗🤗
You describe beautifully the process of the B12 U-turn - it’s not an easy place to be but knowing it’s a temporary launch place to a better life is heartening.
Your comments are much appreciated, I hope that I’m like a ‘Scarlet O’Hara’ in real life, to be optimistic about the future health wise….‘tomorrow is another day’🤗😆🩷
I know how you feel. I’m still reversing out after 6 months of treatment. I am still unable to balance unsupported, need crutches. But pins and needles have stopped, legs feel stronger but my right leg shakes occasionally. This has been hell. I’m injecting every day
It sounds as if you are making good progress from a very difficult starting point. Your perseverance and determination are clearly paying dividends. We didn’t get sick overnight with this ailment and so recovery takes time.
I’m saddened to hear that you were on crutches, I too seriously considered a walking aid, I wanted a walking aid/stick as I was in so much pain with constant pins and needles/sharp electric shock sensations with every step, life was unbearable!! I now walk with much improvement but, cannot be in footwear other than sneakers, I struggle with a tiny heel now. I should not complain though, considering I sincerely thought I would lose my ability to walk properly ever again. Keep on persevering with your B12 treatment, you will continue to improve as more time passes.
Thank you, this gives me hope. I have no pain and pins and needles have stopped, I just can’t balance. Going through this, is difficult. I too are unable to wear anything apart from flats. I use to wear 5 inch heals previously, I don’t know how I did it lol
Hi. I am sorry you are suffering. I was diagnosed a little over a year ago. I went around my doc to get enough b12 to do 2 injections weekly. The first few weeks were awful. Symptoms got worse. I had to take the first week off work. At this time last year I was mostly bed bound and had been for a couple years. I would roll out of bed to work (from home). I'd get back in bed between meetings and get back in bed as soon as work was done for the day. Every single aspect of my life was a massive effort. I was doing grocery pick up because I physically couldn't walk thru the store. Even driving to the pick up was hard. I ended up ordering fast food for my family several days a week cuz cooking was so Hard. So much pain and exhaustion all the time.
Today....I sleep peacefully thru the night wake up at 5am every day with plenty of energy. I immediately feed my animals, start doing chores, make my sons lunch and get him off to school. I go to the grocery store several times a week, walking the whole store. If I forget something, I just go back to the store. The other day I drive an hour and half each way to see an old friend. I spent 6 hours with her. I cleaned out my garage slowly over the past few weeks and got 50 bags of garbage together and picked up.
A year ago I was dying. Now I am thriving. I have some back and muscle issues I am working thru which limits my physical abilities. I think it's caused by old back injuries and muscle wasting from being bedbound, not directly from PA. I have been working thru it. I went to the chiro for 3 months, physical therapy for a few months, use muscle relaxers sparingly. Now I do yoga and stretches every day. It's getting better. I have limitations because of this but I believe it's temporary. I only mention this to keep in mind that having PA can indirectly cause unrelated issues.
The road here was ROUGH. I never thought the nerve pain would stop. The list of symptoms was a mile long. I was miserable, barely functional, everyone thought I was just a fat lazy POS.
I believe I will continue to improve even more. Now I'm at a point where I CAN address physical issues that are unrelated to PA. Once my back is more consistenly stable I will start strength training. Right now I can do a lot of physical work but I know I will have back spasms for a few days after. I pace myself and continue my daily yoga. I accept it will take consistent determination to fix my back.
Just hang in there. It it sooo hard, especially when the treatment makes you feel worse. Mentally it helped to read stories of recovery and understanding that this is temporary. It is very likely that you will have significant recovery. Every step of it may be a struggle and you can't change that but you're definately not alone.
What an inspirational read and mirrors my own experience when exhaustion is beyond anything you’ve experienced before and functioning in small bursts on a need to basis in between bed. It’s a horrible experience and one many are familiar with.
But you make a good point, it s generally a temporary experience and there are better, stronger and more energetic times ahead.
Wow, my goodness, thank you for sharing your journey 💕, and for words of encouragement that will help myself and others. It is so hard, but just hearing this, gives me something to hold on to right now xx
thank you for your inspirational story you went through, I read these to keep going through my recovery, some days my mind just won't relax when I have harder days with new symptoms and pain. if I may ask how long were you with symptoms before you started any treatment. mine was undiagnosed for several years may 6 years or so until this last November 2023 when I started treatment and was totally new to this all, I'm still learning by reading everyones posts and that's how I've learned and prayers being answered. my back muscles nerves and digestive muscle nerves are going through a lot this past month or two, I'm getting ready to start SI methyl B12 for now I've been on Liquid oral. this will all be new as well. I hope and pray for strength.
Recovery can be a a tough process JesusMercy60. I agree with you, had no idea it would be like this when my deficiency was diagnosed. Thought I'd have my 6 loading dose jabs then be on a nice easy 3 month top up...ha! Felt like i was dying after jab 5, with the worst stomach issues ever. Weight loss like you, though it couldn't 'just' be B12. But now I'm 4 months in and things are settling down. I can eat more than just porridge and broth! The B12 specialist I saw estimates that once you start injections at the optimum frequency it takes one month of recovery (probably with reversing out issues) for every year you've been deficient. And bearing in mind the deficiency will probably have started some time before noticeable symptoms, you need to add a couple of extra months to your estimate! Things like viruses, stress, etc will slightly slow the process, while rest and good nutrition with all the necessary co-factors will support healing. It does get better thank goodness, best wishes for your recovery.
Oh My old cat thank you for this information and your reply. that gives me so much hope and a guide line of time. thinking back it could have been like 6 to seven years when everything started for the most part and treatment orally started mid November and I've improved a lot but the changing symptoms are there. I keep saying to myself of what you have all said, pain is healing just keep going and stay in touch with you all. God Bless you all for all your help. and yes Suffering Sunny than you for your post as well
Your time frame is about the same as mine JM60, I was diagnosed December 23. This has felt the longest few months of my life, and I've had cancer/full hysterectomy/ radiotherapy. The difference is that the medical profession has little to no idea of what we experience or need,so it's very lonely. One bad day my poor husband asked who he could call to get help for me and I had to say 'no-one'! Fearful that my gp would just say stop the injections if you feel so bad. But I think I'm beginning to see the faint glow of light at the end of the Reversing Out tunnel... and hope you are in its full brightness very soon too 🙏
We hear so many negative tales here of suffering and battling for treatment, and it's great that there's always someone to help and encourage. But it's been wonderful to read the positive and sometimes amazing improvements experienced by people, especially for those of us just starting our journey of recovery with all its ups and downs. Thanks Suffering_sunny for triggering these stories x
I hope this thread can become a source of hope and solidarity while we navigate such rough terrain.
Many days feels like there's no road ahead, like it can't possibly get any worse, but to read of others who started to emerge through the other side from grinding down the walls before them, gives hope to so many others ❤️
Thank you to everyone who has posted on this thread, and I encourage any one else, who is comfortable to share, to write of their small steps and triumphs here too xx
Heaven has a place for you! I just read all these encouraging stories and they all have helped me today, I'm on month six of being deficient in more than just b12 and had now idea what I was getting into at first. I thought oh I just have to take vitamins and little did I know the reversing out and pain, loneliness anxiety, confusion and everything else. My faith in Jesus has helped me find so many people who are helping others like these posts from you all. this was just another answer to my prayers and questions for Jesus. thank you all so much to know the light at the end of this journey. Love and hugs for you all.
I thought also all the stomach pains and side and back muscle jolts and digestive problems that are now healing better and weight loss that I for sure had cancer or was dying and that the medical profession just was missing it. Im starting to be able to digest certain foods now and have the food digest without horrible pain.
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