10 replies to this topic

[allister]

Its 0515hrs, and after going to bed at midnight, i've had no more than an hours sleep. My legs are killing me - throbbing - pounding - pins and needles - (althought I can only realy feel presure touch sensation, and not the pin prick from thr Dr). Its like my legs have a migrain !!
I can walk aided 20-25ft but even standing/sitting wn't stop it. Can't lie on my side for long as it kills my hips. Is it just me slowly going insane letting it get to me , or is this common? I'm currently on Fentanyl 50's and 75mg amatriptyline at night, but its not helping !!
ANSWERS ON A POST CARD PLEASE !!!!!!

[wheeliebear75]

I'm an L2 incomplete. I know the insanity of which you're speaking........God how I love pot.

[CR_L1]

Hi allister,

I know exactly what you are talking about, symptoms sound very similar, as for the pain I think I’ve just got use to it over time I haven’t known anything else since early 90’s while I was working I would swallow pain killers daily like sweets.
As for the sleeping the only thing I can truly say gives me any form of quality sleep is smoking some weed or getting ratted on cider. I have tried all sorts of meds & cocktails & although some made me sleep they left me feeling worse in the mornings.

[ClaraTaylor]

I fear when I get like that I resort to cider... erm... healthy exercise honest doctor.

Have you tried massaging your legs? I don't know how it works but when I'm bad my partner massages my back and legs... fantastic at calming whatever the hell goes on down there.

Are you like this constantly or just at night?

[Worldbeater62002]

 wheeliebear75, on Jul 10 2009, 02:20 AM, said:

I'm an L2 incomplete. I know the insanity of which you're speaking........God how I love pot.

I think that a lot of people with disabilities are pulling for new marijuana legislation, I'm in the states (Illinois) and am working with Marijuana Policy Project to introduce new sympathetic laws that would allow for medicinal herb. I feel it's a sad shame that so many could have a wide array of symptoms alleviated cheaply and naturally but that government is having its campaigns funded by "big medicine" and pulling the strings on unfair, archaic legislation.


FEEL FREE TO COMMENT, I'M NEW ON HERE

[allister]

 ClaraTaylor, on Jul 10 2009, 07:09 PM, said:

I fear when I get like that I resort to cider... erm... healthy exercise honest doctor.

Have you tried massaging your legs? I don't know how it works but when I'm bad my partner massages my back and legs... fantastic at calming whatever the hell goes on down there.

Are you like this constantly or just at night?

Hiya Clara

Many thanks for your reply, to give you a bit better understanding, rather than my early hours ranting here's the brief sttory so far;

In 1983 when I was 18, I was shunted in a RTA and dislodged 5 discs. Two years of physio eventually resolved the problems caused, but left a weakness.

Periodically over the years up to 2001, I had slipped discs caused by sneezing, bending over to wash my hair etc....,

In April 2001 I herniated L4/5, and in June 2001 had a discectomy. In October 2001 this was repeated because the disc had re-split. As a result of the two ops, I gained scaring on the spinal cord , and an even more permenant misshapened disc. Resulting in poor mobility (can walk 20 25ft max with a stick), poor balance, muscle loss on the legs and buttocks, pins and needles, reduced sensation, and continued chronic pain I was expecting to be off work 4 - 6 mths, I was never able to return.

I use a wheelchair or a mobility scooter when out

My operation were carried out through BUPA by John Webb at the Nottingham Park Hospital,and i have NEVER been able to access the support network for SCI that I wanted or needed.

The only help/rehab that has ever been given to me was in 2003 I attended a pain management course at the then operative Cedars Rehab center in Nottingham (now closed)

I never had access to facilities and support which i believe I should be entitled to if had been treated through the NHS.

Through guidance from the guys at the Spinal Injury Assoc', I've just been able to get my GP to obtain a first refral appt to Sheffield Spinal Unit, Just waiting for a date.


Rang my Gp at 9am today, and by magic got an appt at mid-day. Explained that I've had nomore than about 10 hrs sleep all week, and the hightened pain in my legs, Also that I have had no sentation to pee, or been able to pee since yesterday morning. Usually I mostly ok with the waterworks.

Been prescribed "Gabapentin" 900mg in addition to the fentanyl and amatriptilyne. Supposed to improve the neuro-sensors, hopefully reducing pain, and make me tired so I may sleep.

Ok then, took it at 4pm, and ....................the earths not moved yet !!!!!

Feels like all I have done for the past 8 years is shout to deaf ears and fight a no win battle to get help. Makes me wonder if someone had listened,what would I be like today???

Curled up on sofa watching "Dream Girls" Fab film based on the Supremes. My two dogs wrapped around me and oh so tired!

Cheers and thanks
Al

Thanks guys for ideas, my partner would deck me if I had pot !!!

[ClaraTaylor]

Thanks for sharing that it sounds awful - I'm yet to have my "spinal injury" rehabilitation etc because I'm an incomplete and yada yada so can understand a little of your fustration... doesn't help though!

I found Gabapentin to be a really helpful on neuropathic pain, but am amazed you're still upright! We took the dose up really slowly (i.e. starting at 150mg) over a matter of weeks and it took further weeks of getting the drug into my system for it to have an effect (and even then it made me very dopey i.e. drugged up) so alas please don't expect a big thunder clap and sudden pain free type ness.

Anther one to try which works in almost exactly the same way is Lycra - which is currently my weapon of choice after the gabapentin stopped having an effect.

I am a little worried about the whole not peeing though, is there any improvement on that now? Do you still have full sensation on your rear exit? Over 24 hours must mean you're either disgustingly dehydrated or have a bladder the size of a football. I don't know if your GP surgery closes over the weekend as mine does but seriously consider going to hospital if nothing happens - the nurses are more than experienced at getting the catheter out and avoiding anything bursting (messy).

Keep safe - and if you need any nonsense / someone to rant at do feel free to drop me a PM.

[hartcreek]

If ia ma even not in pain I will be dead. I used to take 2000mg of actomeniphin a day......dont do it as it will loead to liver damage. I now only take a max of 500 mg a day.

With time you will learn to shut offf the pain with your mind.

 allister, on Jul 9 2009, 09:32 PM, said:

Its 0515hrs, and after going to bed at midnight, i've had no more than an hours sleep. My legs are killing me - throbbing - pounding - pins and needles - (althought I can only realy feel presure touch sensation, and not the pin prick from thr Dr). Its like my legs have a migrain !!
I can walk aided 20-25ft but even standing/sitting wn't stop it. Can't lie on my side for long as it kills my hips. Is it just me slowly going insane letting it get to me , or is this common? I'm currently on Fentanyl 50's and 75mg amatriptyline at night, but its not helping !!
ANSWERS ON A POST CARD PLEASE !!!!!!

[Worldbeater62002]

Best of luck with everything at the Spinal Unit!


-Sunshine

 allister, on Jul 10 2009, 03:11 PM, said:

 ClaraTaylor, on Jul 10 2009, 07:09 PM, said:

I fear when I get like that I resort to cider... erm... healthy exercise honest doctor.

Have you tried massaging your legs? I don't know how it works but when I'm bad my partner massages my back and legs... fantastic at calming whatever the hell goes on down there.

Are you like this constantly or just at night?

Hiya Clara

Many thanks for your reply, to give you a bit better understanding, rather than my early hours ranting here's the brief sttory so far;

In 1983 when I was 18, I was shunted in a RTA and dislodged 5 discs. Two years of physio eventually resolved the problems caused, but left a weakness.

Periodically over the years up to 2001, I had slipped discs caused by sneezing, bending over to wash my hair etc....,

In April 2001 I herniated L4/5, and in June 2001 had a discectomy. In October 2001 this was repeated because the disc had re-split. As a result of the two ops, I gained scaring on the spinal cord , and an even more permenant misshapened disc. Resulting in poor mobility (can walk 20 25ft max with a stick), poor balance, muscle loss on the legs and buttocks, pins and needles, reduced sensation, and continued chronic pain I was expecting to be off work 4 - 6 mths, I was never able to return.

I use a wheelchair or a mobility scooter when out

My operation were carried out through BUPA by John Webb at the Nottingham Park Hospital,and i have NEVER been able to access the support network for SCI that I wanted or needed.

The only help/rehab that has ever been given to me was in 2003 I attended a pain management course at the then operative Cedars Rehab center in Nottingham (now closed)

I never had access to facilities and support which i believe I should be entitled to if had been treated through the NHS.

Through guidance from the guys at the Spinal Injury Assoc', I've just been able to get my GP to obtain a first refral appt to Sheffield Spinal Unit, Just waiting for a date.


Rang my Gp at 9am today, and by magic got an appt at mid-day. Explained that I've had nomore than about 10 hrs sleep all week, and the hightened pain in my legs, Also that I have had no sentation to pee, or been able to pee since yesterday morning. Usually I mostly ok with the waterworks.

Been prescribed "Gabapentin" 900mg in addition to the fentanyl and amatriptilyne. Supposed to improve the neuro-sensors, hopefully reducing pain, and make me tired so I may sleep.

Ok then, took it at 4pm, and ....................the earths not moved yet !!!!!

Feels like all I have done for the past 8 years is shout to deaf ears and fight a no win battle to get help. Makes me wonder if someone had listened,what would I be like today???

Curled up on sofa watching "Dream Girls" Fab film based on the Supremes. My two dogs wrapped around me and oh so tired!

Cheers and thanks
Al

Thanks guys for ideas, my partner would deck me if I had pot !!!

[bobm]

I am troubled that Clara is using LYCRA as a replacement for Gabapentin. My Missus has been pressing me to get something stronger from the Doctor, but I never considered this.

But then I guess that Clara is much better-looking than me.

[ClaraTaylor]

 bobm, on Jul 13 2009, 06:46 PM, said:

I am troubled that Clara is using LYCRA as a replacement for Gabapentin. My Missus has been pressing me to get something stronger from the Doctor, but I never considered this.

But then I guess that Clara is much better-looking than me.

Works a treat once you get used to all of the attention from the passing cyclists. And really does show off the perk in ones rump.

Yeah my spelling never has been great!