Extreme muscle weakness for how long ... - Pernicious Anaemi...

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Extreme muscle weakness for how long it takes to get recovered?

Hamayeshguy profile image
19 Replies

I feel my muscle endurance for each position is time based now. I don't know why I have developed such a large number of neurological symptoms. These symptoms developed just in two or three months and now it's getting improved but it's so slow?

Is that very common in B12 problem this extent of muscle weakness?

Has anyone else experienced such an extent of weakness. When I go for a walk and come back home, my clothes are in completely soaked sweat. I have severe weakness in tighs muscles. Is there any other disease related to my symptoms?

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Hamayeshguy
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19 Replies
Lilly73 profile image
Lilly73

Hi. I dont have any answers for you I'm afraid, but I too have severe muscle weakness. In a flight of stairs I can make it to about step 5/6 before my legs just don't want to move anymore. I can't go out with the family on long walks, or if I do I need frequent "rest breaks", then I'm useless after. I have no strength in my arms and rely on others to open things for me ( jars, bottles,etc). Hoping someone else out there has some wisdom for us to ❤

Hamayeshguy profile image
Hamayeshguy in reply to Lilly73

So it's common and in B12. In this forum people have to many different symptoms but in my case are mainly muscles related along with tinnitus, double vision, blurry eyesight. My muscles have lost their endurance and for each specific position now it's time based but it's getting improved. I have pain and numbness too but it's getting improved. I can't sleep more than seven hours now because of numbness bin my back hands neck . I can't walk more than two or three hours ( I have to get break rest frequently). Unfortunately on and off there is elevator breakdown and I have to walk up on stairs up to ninth floor with or without bag. And afterwards it takes a day to get rid of muscle pain. Canada winter is another problem. I live alone and it can't even leave my place to join my family because of long flight. Almost 21 hours. Thanks to God my symptoms are getting improved but very slowly. I think it's gonna take more than a year to get rid of major muscle weakness and takes two years to completely back to normal life

Anderson2022 profile image
Anderson2022 in reply to Hamayeshguy

Hi friend.I was feeling just like that.Thank god i have recovered 90%.Soon i´m sure i will be completly fine.You will be just fine, i promise you.

Hamayeshguy profile image
Hamayeshguy in reply to Anderson2022

Even I can't sleep more than four to five hours because of numbness in deltoid muscle and back and as we ass back of neck. It comes and go. Four couple of days I'm taking antibiotics for my tooth infection band my symptoms returned back. I don't know for how long this horrible disease can ruin my life. I pray every second just can sleep without numbness. At least sleep eight hours.

Gardenswithwings profile image
Gardenswithwings

I'm trying to figure this out myself. Certain abdominal muscles failed on me during my worst days. When lying flat on my back, I couldn't left my legs up off the bed, nor could I sit up (I could only lift my head up). Seemed like severe muscle weakness.

BUT as I started B12 injections, those muscles seemed to respond extremely rapidly. One day, they wouldn't work at all, but hours after an injection, they could suddenly function relatively well - at least for a small amount of activity. Then, 24-48 hours after an injection, their strength slowly faded away again.

So, for me, it seems that my issue may have been more that the nerves connecting to those muscles weren't working well, but high levels of B12 saturating my system helped the nerves to function better for a while. I don't think that if it was only muscle weakness itself, that the muscles could suddenly significantly improve within a few hours (at least, for a limited time). Mind you, I started receiving injections just 5 weeks after my neurological symptoms started, so I'm not dealing with long term nerve damage.

Now, as I continue to receive regular injections, their ability to function has steadily improved - though if I do too much (say, walk a bit longer than usual) the weakness can suddenly return and can require a couple days of rest to improve again. I wish I understood better what was going on.

Hamayeshguy profile image
Hamayeshguy in reply to Gardenswithwings

My symptoms are getting improved but so slowly. I inject every five days along with taking slow release B12 pills which are so effective in my case. My symptoms bat the beginning wasn't that much but I think my deficiency was so severe and my muscle problem execerbate after starting lightly exercise. But before my rest of body show weakness my stomach muscle was like tormented, and it's weakness caused umbilical hernia on itself. I have double triple vision and it's because of eyeballs muscle weakness and brain interpret in multiple pictures. My thighs muscles my back my hands my shoulder and back muscles now all are involved but symptoms are getting improved. I had severe numbness in back and hands but improved. I have no idea why symptoms are too much but hopefully they are getting improved slowly

EiCa profile image
EiCa

Hello,

I don't know if my problem is the same as you describe, but for months now, my upper thighs have hurt...almost like a burning, tearing pain. An MRI of my hip/groin did not show any damage to this area. I am wondering if this is due to muscle weakness and/or anything like what you feel?

Thanks.

Hamayeshguy profile image
Hamayeshguy in reply to EiCa

In my case is not just thighs, it's all of major muscles. The worst part used to be stomach muscles since I had umbilical hernia on it's own. But now I have bad muscle weakness in shoulder and back and numbness as well. The reason I have too much muscle symptoms is due to exercise right after megaloblastic aneamia in order to get rid of dizziness but my symptoms worsened so badly. But the other reason my symptoms worsened is due to lack of right amount of B12. Then I started to take B12 slow release and switched to hydroxocobalamin injection and taking active b complex and also taking iron then I saw improvement. But recently I had an tooth infection and my dentist gave me antibiotics. My symptoms returned alot but I hope I'll be able at least seven hours. Due to sever numbness in my shoulders and back I can't sleep more than four hours. This horrible disease ruined my life. All if other symptoms do nothing for sleeping except numbness in shoulders and back. I don't know how to get rid of it. I'm wondering if somebody else have the same problems that I have. I think my symptoms bare the worst in this forum

Kat_88 profile image
Kat_88 in reply to Hamayeshguy

i have just the same symptoms! It affected my muscles the most and i feel weak and can’t go on a long walk and get so tired! I was misdiagnosed in the first 3 months and now i’m taking only oral b12 (7ml) a day for almost one month and the recovery is not as fast as i expected to be! BTW i am surprised everyone got injection except for me! Because last year that i had the lower number ( but i did not have muscle problem much) i recovered faster!!! How long it took for you to recover from this irritating muscle twitching and weakness which makes life really hard!!! Hope you are doing great!

☺️☺️

charks profile image
charks

After my collapse due to low b12 I couldn't stand up without help. Within hours of supplimenting I started to get better. Within 3 days I could walk normally, no staggering and walking into door frames either. It was just like a miracle. That was a year ago. My legs are now fine. But I have not regained the muscles in my arms or hands. I am weight lifting but it doesn't seem to be working. I can't lift anything like the weight I used to and can't open jars etc. And I am still clumsy, bad handwriting etc. But from what I'm reading this may get better. I really hope so. But just like Gardenswithwings I would love to know how B12 works so quickly and why. Does anyone know the answer?

Jillymo profile image
Jillymo

You are trying to exercise exhausted muscles which will weaken then further. Having to climb stairs when the elevator is not as you described would put me in my bed for days to try and recover.

I can fully understand how awful these symptoms are I too live alone and found them very frightening. To be active and reduced to not being able to function is not pleasant for anyone to have to endure.

There is no quick fix for this condition progress seem's to be very slow.

There seem's to be very little understanding of B12 deficiency with regard to the medical profession. I am injecting more frequently due to the burning, twiching ect making me unable to sleep, I also have the shoulder pain which is driving me to distraction.

There are many on here feeling the same as you but remember we are all different and recovery can be slow depending on the amount of nerve damage. I can honestly say I have never experienced muscle weakness of this kind before yet I have various autoimmune conditions to contend with on a daily basis - lupus, chronic fatigue, sjogrens, thyroid and Aps ( sticky blood) to name just a few.

The B12 deficiency on top of all my other conditions is a big load for me to have to carry but some how I am carrying on.

My legs were so weak like you I tried to exercise to strenghten them but the following day I were in agony and couldn't get out of my bed. If only we had the answer's there wouldn't be so many of us seeking help on here.

May I ask what tests they carried out to diagnose you wth megaloblastic aneamia ?

I hope you make some progress soon.

Welsh15 profile image
Welsh15 in reply to Jillymo

Hi jillymo, do you mind me asking what type of shoulder pain you get? I have pain down my neck across tops of shoulders and down my arms. My gp says don't say everything is due to b12 deficiency. I think I have been deficient for a long time qnd have nerve damage in leg feet and hands take care and thank you

Jillymo profile image
Jillymo in reply to Welsh15

This is a difficult question for me to answer because I dislocated my should due to a fall and had to have surgery. The pain is in my neck, shoulder and top of my arm.

Nerve and muscle damage occured with the dislocation but since the deficiency in B12 the pain kee;ps me awake at night were as it didn't before.

I feel Ialso have the long term damage.

Take care of yourself. 🤗

Welsh15 profile image
Welsh15 in reply to Jillymo

Thanks jillymo, you have been through a lot. Do you know what your b12 was when you were diagnosed? I was told I was borderline at 165 and not given loading doses just 3 monthly injections.

Jillymo profile image
Jillymo in reply to Welsh15

Mine was also borderline and I was also given 3 monthly injections. I was so ill and the 3 monthly regime wasn't enough. I can not understand why you were not given the standard loading dose.

I battled with the Gp to get them more frequently and were prescribed injections every 2 months. I still felt very unwell and the symptoms were unbearable so decided to self inject.

Although my stamina has improved the burning, stinging ect remains.

I am going for a MMA blood test today and seeing a neurologist next month.

I am finding the injections make my symptoms worse before better so i'm only getting a few hours respite.

What a miserable condition this is. 😢

Welsh15 profile image
Welsh15 in reply to Jillymo

Thanks jillymo, I wouldn't wish it on anyone but it is good to know there are people out there who understand. Take care

Kat_88 profile image
Kat_88

i have just the same symptoms! It affected my muscles the most and i feel weak and can’t go on a long walk and get so tired! I was misdiagnosed in the first 3 months and now i’m taking only oral b12 (7ml) a day for almost one month and the recovery is not as fast as i expected to be! BTW i am surprised everyone got injection except for me! Because last year that i had the lower number ( but i did not have muscle problem much) i recovered faster!!! How long it took for you to recover from this irritating muscle twitching and weakness which makes life really hard!!! Hope you are doing great!

B12life profile image
B12life

I had the same symptoms. I used to body build and so I knew it wasn't normal. But much like anderson2020, I have recovered and am stronger than ever. It took 1.5 years of daily injections to get to where I could start exercising to a basic level and then slowly worked up over the last year after that to being more active than ever.

When I tried to space out injections, the first symptom aside from brain fog and fatigue was tightness in my pectorals. weird. Like they say, it's different for everyone.

it is definitely a slow progression, but understanding that it took 4 years to get depleated, it makes sense that it's not an overnight recovery. Hang in there and give it time. if after some time you don't feel improvement, then look for other causes. I mean it would't hurt to rule out thyroid.

Kat_88 profile image
Kat_88 in reply to B12life

I am happy you're doing much better but I wonder what was the number of your b12 at the time of diagnosis and was it related to malabsorption or anemia? Have you been getting injection every day for 1,5 years??? mine was 168 when I tested for it and my GD only gave me oral b12 (7ml) daily!!! I am also thalassemia minor! I am surprised why I was not given injections as everyone else!!! I see progress but slow, but I need to get stronger and go back to gym and normal life,,, I'm tired of it :/ try to be hopeful and positive though

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