Get worse before better?

[Chickens44]

I have read lots of posts about reversing out, but just wanted to have a moan. I seem to have a different symptom each couple of days, and always worse than I had before diagnosis. One minute I’m completely exhausted, and the next I’ve got chronic nerve pain, then sweating following small exertions. It’s so wearing. I’m trying to stay positive. Dr K says all my levels are good, ferritin, folate and B12, I do need to keep working on my vitamin D, and it is rising slowly. I’m three months into my protocol for info. And all correct cofactors, and a healthy diet.

I just want to cry, partly I think because I have no one to moan to except my two dachshunds, and I think even they are bored with my moaning now! I just want to feel well again, and be able to do things I did before. I have been known to get out my drill, saw and screwdriver and make a chicken run! But now I do 20 minutes gentle weeding and I’m a complete mess.

I’m sure most of you have experienced this, and have either come through the other side or still going through it. I just want to know that it will be worth it. As it might just be I do have fibromyalgia and will always feel like this 😩

[Chickens44]

sorry folks, I feel like I’m a scratched record, keep repeating myself!

[JesusMercy60 in reply to Chickens44]

good morning Chickens44,

I have to tell you I'm at three months as well on eod inj. on cyano b12 and multi's and small amount of iron liquid. I am able to get around a little and do baby chores, but otherwise I have to go lay down again. it all comes and goes through out the day some moments I'm like oh wow I feel pretty ok at the moment then I'm down again, both emotionally and physically it comes and goes, it was a lot worse before I could not put on a sock on my feet the pain was so bad. like at the moment my feet don't hurt at all then tonight they may be aching again. when I take any thing oral like my multi's I get all sorts of different reactions in my brain and body so I'm sure I was deficient in other vitamins as well. I'm sure this is all reversing out and the nerves healing. I've read it takes a long time. I have to read the positive posts from others to keep going. I'm like you I want to ask everyone that is on the other side now, how long did it take you and in three months what were you going through, because my mind starts making me wonder if i'm not doing the right thing. everyday I go through these thoughts. but I was soo much worse before I could not even go out of the house mentally and physically.

[Chickens44 in reply to JesusMercy60]

I think I just need reassurance it will get better. But no one can guarantee that unfortunately. I was doing okay before, not great and had some bad days, but I used to go swimming a couple of times a week, and managed to keep on top of things, but I seem to be going one step forward, one step back at the moment, and repeat. I keep reading the positive posts too - it keeps me going! I do keep a symptom diary, although not every day, and one symptom will get better, and then another gets worse. I sometimes wonder if there is something else going on that I dont know about, but everything else seems to be working fine. I think a lot of people feel like that.

[Nackapan in reply to Chickens44]

I often thought 'they ' had missed something.My daughter wax misdiagnosed with fibromyalgia.

We all heal in different time frames.

It took s long time fof me as caught late and treatment late.

Time

Patience

Pacing

Sometimes the improvements so subtle you don't even notice.

The bath water used to move lije waves hurting my head .

That gradually stopped.

I coukdnt stand long enough to have z shower .

Then I coukd .

Awful 'stuck to thf spot' leaden legs improved and so on

Just keep going .

To date nothing else had bed found to treat in my case.

Accept every test to rule othef things out

[Nackapan in reply to JesusMercy60]

Ag the 3 months mark I wax very ill It wax a challenge getting out of bed yo eat at a table .

Often nausea wouid take hold or balance off .

I had a continuous migraine going on sometimes peaking which at times 2as intolerable.

Was on alot of pain killers .

I couldn't open a Christmas present ad the paper made too much noise .

I coukd go on .

I truly thought I was slowly dying 😪

So I would say its very early days .

Keep going .

It's a cruel rollercoaster.

Just do jot try to push through as it sets you back.

[Chickens44 in reply to Nackapan]

Thanks for reply. It does give me hope. I suppose every night when I go to bed I think I am going to have a better day than yesterday. And it doesn’t come. But I am doing better than a lot of people so I must be grateful for little things.

[JesusMercy60 in reply to Chickens44]

yes your are correct just don't push things, I was doing better as well before, I was walking for 1/2 hour but I found out I was using up all my storages, my feet started to get worse oh and I was only on oral b12 liquid, then when I started to inject eod is when I really started to have these symptoms so I am sure I was not treating hardly at all with the oral, now my nerves are getting the treatment they really need. I also am thinking like you with wow I did better today so hopefully tomorrow will be better, but nope a few better days then a few worse days. I do try and stay laying down even if I feel ok just to get the rest we need to heal. I'm hoping in a year like everyone else they say after a year it's way better. even my personality suffers and that I really don't like. I feel more nervous and more unsure of things when I'm out talking too much for too long I start to feel strange or maybe anxious. I'm hoping that will all go away too.

[Mixteca in reply to Chickens44]

Expectation in this aspect can be very damaging, making you more anxious and hyper aware. That's a route you need to avoid, I know as I've been there.

The best thing you can do is to try to go with the flow, find acceptance, and allow your body to heal at it's own rate.

Pacing is important, as is looking after your mental health rather than panicking. The fear, anxiety and stress can become chronic, sending you on a downward spiral, and your autonomic nervous system can get stuck in fight/flight mode, leading to further issues.

Breath work, yoga, whatever works for you, can help you feel grounded and will help you to relax and stay calm. Acupuncture can really help with symptoms, it's helped me with a lot of health issues over the years. Cold water therapy and outdoor swimming is good for the ANS, my sister swears by it.

[JesusMercy60 in reply to Nackapan]

hello Nackapan,

yes that is also a strange symptom the noise thing. I too was bothered and it would set off nerves with others talking too loud and laughing in the house, and If I had a friend come to visit me I was totally panicking , it was the worst. even my baby grandkids, I missed them so much but could hardley stand being around anyone.. I would just find peace in bed in prayer. anything else was horrible. and yes we were really dying. I often wonder how long of a death that would have been, I know one thing it was painfull and lonely and maybe like that getting worse for a long time. but this forum was an answer to my prayers too finding all the support is here with you all.

Rosina

[Chickens44 in reply to JesusMercy60]

I can appreciate the noise thing. I stress when I think I might have to be with people or places where there’s too much noise and activity.

A psychologist once said to me, if you feel like it’s a struggle, like a tug of war, just let go of the rope. And I relax and find it helps to calm me.

[Wwwdot in reply to Chickens44]

Hi Chicken

I love the rope analogy - I will definitely let go more often - there will be some sore bums around! 🤣🤣🤣🤣

[Chickens44 in reply to Wwwdot]

When I ‘let go of the rope’ I feel the tension leaving my body. It certainly works.

[Wwwdot in reply to Chickens44]

Never need to apologise to us for being who you are - honest ranting and out pouring is helpful.

🤗🤗🤗

[Loupharm]

keep the faith, things will get better, it takes time for your body to repair as you’ve been ill a long time. I’m 18 months in and feel like a different person! I’d suggest you take advice from a nutritional therapist/functional dietiitan too.

[Chickens44 in reply to Loupharm]

I am actually seeing a nutritionist. I’m due for my second appointment with her in a couple of weeks. She has me on lots of good healthy supplements. She is a doctor of immunology so very good at what she does.

[Myoldcat]

I remember 3 months was a really rough time for me, almost peak reversing out. The "different symptoms every couple of days" really resonates - I described it as a buffet that my body would randomly select from every day! And like you Chickens44 I experienced many new symptoms like stabbing shin pains and awful gastritis. But I did begin to notice slow, steady improvement from that point, and at 9 months in I am significantly better, and definitely have much more energy. Still have setbacks, but when I look back at my symptom diary it's almost like a different person. So as others have said, keep going, have patience, and have faith that things will improve.

[JesusMercy60 in reply to Myoldcat]

hello Myoldcat,

I'm happy to hear you are getting much better and this is hope for me, I am almost 4 full months in now and like your timeline things are improving, my tummy is having a hard day but I have had some good days with it but I tried folic acid yesterday and I think thats what messed me up, otherwise my symptoms are off and on still but better than the beginning. I'm praying that we all get over our symptoms. I think I'm still reversing out with new nerves in my back as you said you have had new reversing out about your first 3 to 4 months.

[DiSews]

Dear Chickie, I know what you are saying! A good day here and there gives hope, then the next minute you are worse again. I, too, am hanging on to the hope and encouragement extended here because I'm not getting much from anywhere else. I am almost 8 months in, but still battling the exhaustion. Some days I can walk 3km, other days getting to the letterbox is ambitious. I miss days in the garden, especially with spring just around the corner here in the antipodes, and I have so much sewing I want to do for my grandchildren. I am also deeply saddened by the sacrifices my dearly beloved has to make because am so useless right now. I am so thankful for the community here, for those who have shared their experiences! Chin up! You are not alone, and we will stick together . God willing, next year we will all start easing back into a more normal life 🤗

[Wwwdot]

Hi Chickens

You moan!

It’s a lonely horrible recovery path. But you sound on track. I was in bed for 3 months in the early days with every bit of my body aching and complaining and zinging and fizzing and I cried a lot and felt helpless.

That was 21 months ago. I am now back at work full time and able to go for walks, cook family meals for 7 and enjoy life. So hang in there and allow your poor body to sort itself out.

Recognise this time as a difficult time and there is no quick fix. Give your body rest and be kind to yourself. You are a brave soul to walk the path to health.

🤗🤗🤗🤗

[B12again]

Yes, like everyone else is saying, push through as best you can and don’t be afraid to rant a little in a safe space on here amongst folk who empathise. It’s taken me a year to get to a place of being able to live a reasonable life. My main learnt lesson was not to jump about hastily trying new things. Dr K would have advised you about cofactors I’m sure. I don’t know if he mentioned magnesium, it was a big advance for me when I started taking it as well. I take 400mg of Elemental Magnesium daily in powder form from Vitamin Express. Hoping you’ll soon enter sunnier days.

[Chickens44]

Thank you so much for all your positive thoughts. It’s certainly keeps me going, I am tearful now, not from being sad, but that people understand what I am going through and don’t think I’m just a hypochondriac with a ‘bit of a vitamin deficiency’. 🥰

[Wwwdot]

Well done Chicken!

That’s the spirit!

🤗🤗🤗

[PlatypusProfit8077]

there’s definitely hope! The 3 month mark was so hard, I still felt so awful every day.

I’m now at 7 months and doing really well symptoms have really minimised or gone. But I do get tired more easily…

I did push myself too much this past weekend but this was: driving 5hrs to the city solo, attending a cousins funeral, endless small talk with relatives, caught up with in-laws and old friends, spent the day with my parents including shopping, dinner with my sister and family, then an MRI the next day followed by the 5hr drive home…and then worked 3 days! I’m pooped!

2 months ago, too much was going to the shops for groceries or having to do after school activities

[JesusMercy60 in reply to PlatypusProfit8077]

hello PlatypusProfit8077,

I was finding your post very positive. I'm in the beginning of my 4th month and some days have been getting better and some days I find it pretty hard at times. I'm still learning about PA B12D. inj eod and today I tried a 1/2 ml on the day that I don't normally inj.. I'm still very tired and have my up moments but I felt I needed to try and see if maybe I need an extra 1/2 ml on some days.

my question if I may ask is how long did you go deficient or that you could tell you were deficient. and what kind of symptoms did you get. thats so hopefull that you have done so well. your comments will help..

thank you,

Rosina

[PlatypusProfit8077 in reply to JesusMercy60]

I’m glad to hear you’re doing a bit better! Progress is small but good.

I don’t really know how long I was deficient for.

My big crash where I collapsed at work was in March 2024 (serum level 172pmol/l). August 2023 my level was at 180pmol/l but I was focused on iron levels, and the doctor just noted that my “B12 was slightly low”.

I had been feeling particularly exhausted and a bit breathless on exertion since about April 2023, but honestly put it down to iron because I’ve always had trouble with it.

All my other symptoms (eyesight changes, memory issues, muscle weakness, gut issues, anxiety) really crept up on me slowly and so I didn’t know they were linked until I looked into PA after I started receiving injections.

So, at a guess, I would say that I was deficient for maybe 2 or 3 years? It’s hard because there is no date where everything started.

[JesusMercy60 in reply to PlatypusProfit8077]

Oh thank you for your reply , yes I too had a collaps at work last year early but I noticed signs about 6 to 7 years ago honestly that I thought were menopause beginning and things just kept getting worse. so i do have neuro healing as well and mood is getting better too, I was never a anxiety person and very active with work and exercise and helping others, but everything changed and was at the end of my rope and had to retire and had been to every kind of specialist. so now I have answered prayers with the PA b12D and this forum to learn from. it seems this forth month as I can tell from reading everyones post can be on of the most difficult or up to 4 to 5 months. So I'm hoping and praying that this is true for most of us.

Well thank you again,

Rosina

[RoMello]

Oh I do so feel for you❤️. It's awful feeling in limbo with all the unknowns that go with symptoms.

Not helped by the medical establishment's labelling us as imagining it and the difficulty of friends and family in understanding how hard it is.

I got angry scared and depressed (and sometimes still do...)

I hope you know there are so many of us here who can sympathise with you.

The great thing is that you're starting something that should ultimately lead you towards improvements. The tough part is it takes time and you can't always see the improvement.

As others have suggested trying a symptom diary to help you feel hope and progress.

And give your days extra cuddles. I have to borrow a neighbour's visiting cat.

Feeling for you and sending good vibes 🌹