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-   -   Gets worse before it gets better??? (https://www.neurotalk.org/peripheral-neuropathy/220203-worse.html)

dman9271 05-13-2015 05:03 AM

Gets worse before it gets better???
 
For those that have gotten better with their PN, have you noticed that your symptoms get worse before they get better? This week has been the absolute worst. The shooting pain has not stopped for 2 days straight. Someone said to me that maybe it's the old saying that things always get worse before they get better. I also read somewhere that as the nerves recover they tend to produce more pain.

Thanks

glenntaj 05-13-2015 06:17 AM

Yes--
 
--this is a phenomenon that has been reported, as often, regrowing nerves (and nerves regrow very slowly--even under the best of conditions a figure of 1mm/day is often cited) must fight their way through or around other tissues, and the sensations such incompletely connected nerves record are often interpreted by the brain in unusual ways.

It is difficult to know if one's symptoms are getting better except in longer term retrospect, one reason many of us keep long term symptom diaries. Many of us are prone to symptom "flares" as well, which may eventually "die down" to more baseline symptom levels, or even, hopefully, lower baseline levels.

baba222 05-13-2015 11:55 AM

Quote:

Originally Posted by glenntaj (Post 1142059)
--this is a phenomenon that has been reported,as often, regrowing nerves (and nerves regrow very slowly--even under the best of conditions a figure of 1mm/day is often cited) must fight their way through or around other tissues, and the sensations such incompletely connected nerves record are often interpreted by the brain in unusual ways.

It is difficult to know if one's symptoms are getting better except in longer term retrospect, one reason many of us keep long term symptom diaries. Many of us are prone to symptom "flares" as well, which may eventually "die down" to more baseline symptom levels, or even, hopefully, lower baseline levels.

I was wondering about stinging specifically. I have only had this for a few months. Is it possible that there is some regrowing with that symptom, or are things just getting worse?

Healthgirl 05-13-2015 01:11 PM

Quote:

Originally Posted by baba222 (Post 1142125)
I was wondering about stinging specifically. I have only had this for a few months. Is it possible that there is some regrowing with that symptom, or are things just getting worse?

My neuropathy is definitely changing to more of a stinging when I am at rest vs shooting. I am also having more twitches and wet drop feelings everywhere. Im not sure what it means, but it isn't worse- just different and not quite as bad. Hoping that could mean healing.

Vanessa Gray 07-28-2015 08:37 PM

Time line
 
Quote:

Originally Posted by glenntaj (Post 1142059)
--this is a phenomenon that has been reported, as often, regrowing nerves (and nerves regrow very slowly--even under the best of conditions a figure of 1mm/day is often cited) must fight their way through or around other tissues, and the sensations such incompletely connected nerves record are often interpreted by the brain in unusual ways.

It is difficult to know if one's symptoms are getting better except in longer term retrospect, one reason many of us keep long term symptom diaries. Many of us are prone to symptom "flares" as well, which may eventually "die down" to more baseline symptom levels, or even, hopefully, lower baseline levels.

Hi Glenntaj - I find your posts very informative- thank you. My neuropathy (foot drop) is due to a surgeon error (sutured around the common peroneal nerve - 1 week before discovered). I have had all the symptoms that you described - tingling zapping, tightening skin etc. it is now 7 weeks post op of removal of the suture and everything is starting to slow down. I am just interested in your timeline for recovery? Kind regards Vanessa

zkrp01 07-29-2015 09:21 AM

Butting in
 
Quote:

Originally Posted by Vanessa Gray (Post 1158380)
Hi Glenntaj - I find your posts very informative- thank you. My neuropathy (foot drop) is due to a surgeon error (sutured around the common peroneal nerve - 1 week before discovered). I have had all the symptoms that you described - tingling zapping, tightening skin etc. it is now 7 weeks post op of removal of the suture and everything is starting to slow down. I am just interested in your timeline for recovery? Kind regards Vanessa

Until Glenneta replies, I had foot drop after a hyperexrension of my knee. I remember that the recovery was slow. Being careful not to fall for about a month and within 5 month was not really aware of it anymore. Used L-shaped prosthetic for a while at first to keep from tripping. Good Luck, Ken in Texas.

Vanessa Gray 07-30-2015 12:02 AM

nerve recovery symptoms
 
Quote:

Originally Posted by zkrp01 (Post 1158474)
Until Glenneta replies, I had foot drop after a hyperexrension of my knee. I remember that the recovery was slow. Being careful not to fall for about a month and within 5 month was not really aware of it anymore. Used L-shaped prosthetic for a while at first to keep from tripping. Good Luck, Ken in Texas.

Hi Ken, thanks for responding. I am wondering if you are able to describe to me your recovery process over those 5 months and the type of rehab you undertook. Much appreciated.

Equine Dentist 07-30-2015 04:07 AM

Quote:

Originally Posted by Vanessa Gray (Post 1158700)
Hi Ken, thanks for responding. I am wondering if you are able to describe to me your recovery process over those 5 months and the type of rehab you undertook. Much appreciated.

I am wondering too. I started with a foot drop, then the tingling, then the shocks. I wore an air cast for three months. Later I took Gabapentin and I was a little better. Just tired all the time with sore feet and hardly any shocks. A year later my hands started to claw up in the mornings and hurt all the time. I now habe pinched nerves in my elbows, wrists and neck. They say that this is common and that they can't do anything because it's minor and that most of the pain I feel in my arms and hands is caused by nueropathy. I also wake up screaming with muscle cramps in my legs. I never in a million years thought that it would get worse like this. I am still very much in denial about my future. I would really lobe to know what the next syptoms are too. Sorry to say so much on your thread, I just feel like we are searching for the same thing.

glenntaj 07-30-2015 06:13 AM

Depending on the extent of the surgical error--
 
--that is, how much of the nerve itself was severed/separated, full recovery may take months to years, if it happens at all.

Traumatic nerve injuries that involve crush or stretch are usually easier and quicker to recover from than those that involve severance or separation. In the latter cases there has been some experimental use of nerve grafting to encourage the separated ends of the nerve tracts to reconnect, but this is far from a certain technique.

It may just be a process of waiting, monitoring, and keeping track. DO expect there to be some weird sensations, and symptom upticks, during the process.

Healthgirl 07-30-2015 10:26 AM

Quote:

Originally Posted by glenntaj (Post 1158738)
--that is, how much of the nerve itself was severed/separated, full recovery may take months to years, if it happens at all.

Traumatic nerve injuries that involve crush or stretch are usually easier and quicker to recover from than those that involve severance or separation. In the latter cases there has been some experimental use of nerve grafting to encourage the separated ends of the nerve tracts to reconnect, but this is far from a certain technique.

It may just be a process of waiting, monitoring, and keeping track. DO expect there to be some weird sensations, and symptom upticks, during the process.

I am glad to be able to chime in on this one!
When I was 15 my pinky finger artery and nerve was cut in half and had to be repaired by a plastic surgeon. It took years to have normal sensation. It had numb spots and tingly sensations for at least 3 years and then if I remember correctly, it took about 6-7 years to have complete sensation back.
I always think of this as encouragement that nerves can heal. It's a matter of finding the cause though- that deters that from happening for those of us that can't figure out what is attacking the nerves.

dropfoot 08-03-2015 05:23 AM

Nreves re-connecting
 
Quote:

Originally Posted by dman9271 (Post 1142055)
For those that have gotten better with their PN, have you noticed that your symptoms get worse before they get better? This week has been the absolute worst. The shooting pain has not stopped for 2 days straight. Someone said to me that maybe it's the old saying that things always get worse before they get better. I also read somewhere that as the nerves recover they tend to produce more pain.

Thanks

Hiya, I was in a similar situation to you, I developed sharp shooting pains and the sensations in my legs started to feel weird. Whilst showering suddenly the water would feel like boilng water had just been poured over my foot. I would just think nothing of it.

Over a space of a few weeks my legs siezed up and I developed foot drop. The doctors thought it might be due to a Vitamin B deficeny. They gave me a shot of Vitamin B, but they forgot to test my blood before giving me the shot!

I was told to take Thiamine and Vitamin B compound tablets twice daily. No real improvements, I requested that I wanted to see a physiotherapist, the lady who saw me felt so so bad for me. I had waited 3-4 months to see her I should have been sent by the doctor asap. They then put my legs in casts to help straighten them up. The casts were moulded around my legs and changed every 2-3 weeks. I had to wear the casts as much as possible per day only taking them off to shower usually (18 hours). They were uncomforable and hurt, at night I couldn't sleep. My feet were so so sore.

Over a period of 3-4 months my calf muscles started to lengthen, I was also doing simple excersises at home, leg raises on the stairs walking on tip toes.

I started to get sharp pains again and was so worried. Was the condition worsening? No it wasn't....thank god! It was improving, the pains wouldn't last long, maybe a few minutes, they were not daily. At night I had more pains than in the day.

After 22 months of developing this foot drop, I am nearly back to normal. My leg muscles had wasted and am building them up daily. They will take a long time. I wear ankle weights when ever I have free time. I eat well, no alcohol, no smoking no really late nights.

I drink my medication on time all the time. Drinking atleast 4-5 pints of water a day. I try not to worry about things too much.

I have a two year old and a three year old. The most precious things in my life. As there father I wasn't devasted for me but for them. How am I going to be able to go to collect them from school? How can I take them out anywhere? I couldn't even carry my then 6month old baby daughter up the stairs to put her to bed. I was depressed, but kept positive.

I cannot run properly but doing day to day things is not a problem. Life is good, the girls have a able father again.

The nerves will heal guys, just give it time. Everybody is different, and we all heal in different ways. Our bodies are made to adapt, so even though the nerves are damaged, they will repair. I have given myself 3-5 years to be able to be 95%. I hope to get there. There are always the good days and bad. Leg cramps, if someone steps on my foot it feels like a tonne of weight has hit me. Sometimes at night the pain from the re-connecting nerves is so bad I can't sleep. But I can see things are getting better. You will too.

Chin up always and be strong, recovery is happening as I write this!

beatle 08-03-2015 11:20 PM

I have experienced my symptoms get worse before they get better and also get worse before they get worse.


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