Ever increasing numbness

[[ch...]]

I am so very worried that the numbness I have that started during tapering just gets worse and worse,

 

I don't know why,  It began in my finger tips and now it's most everywhere , even my eyelids

 

I have checked with my Doctor and had bloods done post taper, I have rung several times and they say to contact the mental health team as they think it is anxiety but I don't understand how it's even in my eyelids .

 

I am so afraid I will  just stop breathing in the end,

 

I know others get numbness but it's intermittent and it doesn't leave with me,

 

I try to exercise and go walking but nothing really helps, 

 

I am afraid that I am so damaged that this wont stop,

 

I dare not go to A&E with the virus around,  not at aged 75, 

 

I really am not sure , what to do next the Doctors I am sure are sick of me ringing to ask

 

It seemed to go worse after taking Macrobid during my taper  for a UTI, , and started after using an antifungal cream for a rash on my neck,  with some numbness in my finger tips

 

I have such tightness of the muscles in my arms, and my face is so bad, it all feels cold in my head but in reality not so .

 

I really wondered if anyone has had this go on and on but eventually leave ,

 

I am not sure which way to turn. I have it in my head that I might stop breathing in the end,

 

Is this the power of the imagination or can it last and last like this  .  and then go?

 

I am so sorry to keep asking for advice  Just at 6 months off plus I did hope that things might be improving instead of getting worse,

 

I do not have a huge number of symptoms but those I have are so intense and constant, 

 

Please can you help ?

 

Jen

[[Aj...]]

Mine is everywhere and not intermittent.

Everywhere outside and inside mouth, nose, vagina etc. I suspect internally as well - hence no feeling of fullness etc.

 

Can you still feel scratch sensations at all?

 

I can sort of in some places but it is very distant and unreal.

[[ch...]]

Mine is everywhere and not intermittent.

Everywhere outside and inside mouth, nose, vagina etc. I suspect internally as well - hence no feeling of fullness etc.

 

Can you still feel scratch sensations at all?

 

I can sort of in some places but it is very distant and unreal.

 

 

Yes I can still feels scratch sensations,  just  and odd feeling,  my hands and feet feel cold yet often the are not so I cannot warm them up at all , I can only gain some comfort from very hot ,

 

in my hands and arms it's very tingly but in my face around my mouth it's as if I have been to the dentist

 

I feel as if both my arms have tightened muscles that are constricting something , but have no idea

 

I have a feeling of a  tight band around my head, or as of wearing a pair of glasses when i am not and feel as if my left cheek has dropped  it is so numb but it hasn't,  all the messages are wrong,

 

Even my eyelids feel numb, and other more person areas too

 

I have no idea what is going on,  whether nerve are damaged or  just not able to send correct messages to the nerve endings,

 

I am  just afraid of it spreading further.

 

My Doctor insists it's anxiety but it feels more like things being squeezed to me,  especially in my arms, 

 

,

 

Thank you for asking  Ajusta , 

 

 

[[Aj...]]

Yes, squeezed.

 

Have all of that and much more.

 

Coldness os nerve sensations. Some ppl with sciatica have coldness down back of legs.

 

Are your muscles actually tight in arms or just feeling tight?

 

Nerves can create sensations of tightness.

 

 

 

 

 

[[So...]]

Hey there Chinchuck,

So sorry it seams to be getting worse. You know mine was VERY severe. I will tell you that at 5 months out it was even worse than ever, definitely worse than interdose, and even rapid WD. So in a way, mine did seem to evolve to an even worse situation.

Now, to be honest, my nerve squeezing pain was truly unbearable and I could not walk or even lift a spoon, so I ended up taking low dose amitriptyline and it helped a lot. I am NOT suggesting another drug for you.

My only point is that from 6-12 months I have gotten progressively better and I believe it is a combo of amitrip and TIME.

Because even though the amitrip helped with the pain it didn't take away all the numbness and pins and needles. That has only been getting less with time. Like from months 9-11, I felt like the numbness had reached a plateau and wasn't going to get any better. Like I was just going to have to live with knees that felt like they had novacaine in them. I just kept going though.

In month 11 I have hit another healing spurt...still have tingles in my left leg but they have started improving again.

 

Sooooo, all that to say that I think it does get better the further out, but maybe talking to a Neurologist about possible small fiber neuropathy? There are some natural things you can try for it like Alpha Lipoic Acid, and Acetyl-L-carnitine, stuff like that. (Didn't help for me, but everyone is different)

Don't give up!!!

[[ch...]]

Yes, squeezed.

 

Have all of that and much more.

 

Coldness os nerve sensations. Some ppl with sciatica have coldness down back of legs.

 

Are your muscles actually tight in arms or just feeling tight?

 

Nerves can create sensations of tightness.

 

 

I am not sure, the upper arm muscles are tight  , but  not so in my face

 

however the numbness in my hands feels different to my face, ,

 

I really do hope this is some sort of worsening going on before things get better ,

 

The same with my ears which are getting worse as time goes on, ,

 

I still wonder whether the macrobid I had to take for a UTI towards the end of my taper might have made the numbness worse,  but it really is  just a guess.  I found out later that those suffering from neuropathy, should not take it as it could lead to permanent damage, 

 

Hopefully not though, and  time will sort it out

 

 

 

Jen

[[ch...]]

Hey there Chinchuck,

So sorry it seams to be getting worse. You know mine was VERY severe. I will tell you that at 5 months out it was even worse than ever, definitely worse than interdose, and even rapid WD. So in a way, mine did seem to evolve to an even worse situation.

Now, to be honest, my nerve squeezing pain was truly unbearable and I could not walk or even lift a spoon, so I ended up taking low dose amitriptyline and it helped a lot. I am NOT suggesting another drug for you.

My only point is that from 6-12 months I have gotten progressively better and I believe it is a combo of amitrip and TIME.

Because even though the amitrip helped with the pain it didn't take away all the numbness and pins and needles. That has only been getting less with time. Like from months 9-11, I felt like the numbness had reached a plateau and wasn't going to get any better. Like I was just going to have to live with knees that felt like they had novacaine in them. I just kept going though.

In month 11 I have hit another healing spurt...still have tingles in my left leg but they have started improving again.

 

Sooooo, all that to say that I think it does get better the further out, but maybe talking to a Neurologist about possible small fiber neuropathy? There are some natural things you can try for it like Alpha Lipoic Acid, and Acetyl-L-carnitine, stuff like that. (Didn't help for me, but everyone is different)

Don't give up!!!

 

 

 

Thank you for the positive post,  I am glad to here of the improvements going on ,

 

I have to hope that this will start to improve eventually, instead of getting worse, ,

 

I feel so down about it all ,especially this symptom and my ears,  and lets not forger the daily fear and dread,

 

Surely it has to improve at some point,

 

It seems as if it's happening for you at last

 

It gives me a little hope

 

 

Jen

 

 

[[Aj...]]

I didn’t take that though and have the numbness everywhere from top of head to feet inside and out.

It gets worse as get lower.

It may be part of depersonalisation but it doesn’t feel like out of body just that sensations are not feeding back to brain properly.

[[Aj...]]

Hey there Chinchuck,

So sorry it seams to be getting worse. You know mine was VERY severe. I will tell you that at 5 months out it was even worse than ever, definitely worse than interdose, and even rapid WD. So in a way, mine did seem to evolve to an even worse situation.

Now, to be honest, my nerve squeezing pain was truly unbearable and I could not walk or even lift a spoon, so I ended up taking low dose amitriptyline and it helped a lot. I am NOT suggesting another drug for you.

My only point is that from 6-12 months I have gotten progressively better and I believe it is a combo of amitrip and TIME.

Because even though the amitrip helped with the pain it didn't take away all the numbness and pins and needles. That has only been getting less with time. Like from months 9-11, I felt like the numbness had reached a plateau and wasn't going to get any better. Like I was just going to have to live with knees that felt like they had novacaine in them. I just kept going though.

In month 11 I have hit another healing spurt...still have tingles in my left leg but they have started improving again.

 

Sooooo, all that to say that I think it does get better the further out, but maybe talking to a Neurologist about possible small fiber neuropathy? There are some natural things you can try for it like Alpha Lipoic Acid, and Acetyl-L-carnitine, stuff like that. (Didn't help for me, but everyone is different)

Don't give up!!!

 

 

How much Amitriptyline do you take?

 

I tried Nortriptyline at low dose but didn’t help and thought was causing sore throat but that hasn’t resolved since stopped it ages ago.

 

Do you feel it relaxes your muscles?

[[So...]]

10 mgs.

It seems to be the only one that stimulates Nerve Growth Factor.

10mg is actually very low, but it was all I needed to help me start walking again. Can't say if relaxed muscles really, but I was so stiff and tight from being bedridden that just it helping with the nerve pain was enough for me to start thearpy and start moving again.

So now I don't have the tightness anymore because I can move normal....so more like the trickle down effect....once I could move again, then I could rehab my body, and the more I can exercise the better for my body, Make sense?

Here is a study about NGF

https://www.sciencedaily.com/releases/2009/06/090625133059.htm

I know you have it rough Ajusta, I wish there was something to help you. Have you considered in home PT? That is what I started with

[[So...]]

Hey chinchuck-

As a side note...I took macrobid around month 7 for a UTI and it did make my tingles worse while taking it. But went back to normal level of tingles afterward. So not permanent!!

[[Aj...]]

I see PTs etc. I still try to do exercises.

Problem is if take anything that relaxes muscles they all collapse completely now, can’t hold head up on neck, arches in feet collapse, vertebra collapse in wring direction that they have been forced to from the contracture, jaw joint collapses and can’t chew because too weak.

Even a baby aspirin or small dose pf Vit D does that.

It causes horrific twisting of muscles in back of legs like they are being ripped off pf the bones.

So, can’t live with the crushing rigidity but can’t take anything that relaxes muscles at all.