Comments for The Neuropathy Trust http://neurocentre.com/community peripheral neuropathy and neuropathic pain: awareness, communication, education and support Sat, 04 Sep 2010 01:41:35 +0000 hourly 1 http://wordpress.org/?v=3.0.1 Comment on Understanding Neuropathic Pain by Lyn Clarke http://neurocentre.com/community/?p=498&cpage=1#comment-475 Lyn Clarke Sat, 04 Sep 2010 01:41:35 +0000 http://neurocentre.com/community/?p=498#comment-475 I found the video really helpful because of the feeling of aloneness that so many people describe here. I sometimes feel that the doctors will suspect me of swinging the lead because the things we try do not work. I had some hope that a nerve block would work but unfortunately, it didn't and the pain is as intense as ever. I have diabetic neuropathy in my feet and legs and now my hands and arms are affected. In addition I also have another chronic pain condition, fibromyalgia, as well as arthritis and I don't always know what pain belongs to which condition. Recently, my back is so painful if I stand for more than about half a minute. I use a powered wheelchair so that I can get around and have a Motability car which makes my life possible! I currently take the following medication for the neuropathic pain: 600mg of Gabapentin in the morning and 900 at night. 50mg of Amitriptyline at night 75 mg of Arthrotec 75 in the morning and at night. 100mg Tramadol in the morning 50 mg at lunchtime and another 100mg at night. My son tells me jokingly that I am a one-woman drain on the NHS - and sometimes I feel it! I am 53 - my body feels like 103 but my mind is still at 21! It's the relentlessness of chronic pain that I find so difficult, it's always there to some degree and I can no longer remember what it was like not to be in pain all the time. I am often awoken by pain in the night and I just have to get up and watch tv or go online in order to distract myself from the pain. I have thought about patches but I am allergic to anything that sticks to my skin, so they are no good. I am also concerned about taking so many drugs and then getting in my car and driving. I feel perfectly safe and not impaired but I am not sure the police would see it that way! Since my life has been restricted by pain I have started to go to watch live football (it's my passion anyway) We get wonderful facilities and the stewards are a credit to the club. It is one of the things that make my life livable! Come on you Gunners!! I found the video really helpful because of the feeling of aloneness that so many people describe here. I sometimes feel that the doctors will suspect me of swinging the lead because the things we try do not work.

I had some hope that a nerve block would work but unfortunately, it didn’t and the pain is as intense as ever.

I have diabetic neuropathy in my feet and legs and now my hands and arms are affected. In addition I also have another chronic pain condition, fibromyalgia, as well as arthritis and I don’t always know what pain belongs to which condition. Recently, my back is so painful if I stand for more than about half a minute.

I use a powered wheelchair so that I can get around and have a Motability car which makes my life possible!

I currently take the following medication for the neuropathic pain:

600mg of Gabapentin in the morning and 900 at night.
50mg of Amitriptyline at night
75 mg of Arthrotec 75 in the morning and at night.
100mg Tramadol in the morning 50 mg at lunchtime and another 100mg at night.

My son tells me jokingly that I am a one-woman drain on the NHS – and sometimes I feel it! I am 53 – my body feels like 103 but my mind is still at 21!

It’s the relentlessness of chronic pain that I find so difficult, it’s always there to some degree and I can no longer remember what it was like not to be in pain all the time.

I am often awoken by pain in the night and I just have to get up and watch tv or go online in order to distract myself from the pain.

I have thought about patches but I am allergic to anything that sticks to my skin, so they are no good. I am also concerned about taking so many drugs and then getting in my car and driving. I feel perfectly safe and not impaired but I am not sure the police would see it that way!
Since my life has been restricted by pain I have started to go to watch live football (it’s my passion anyway) We get wonderful facilities and the stewards are a credit to the club. It is one of the things that make my life livable!

Come on you Gunners!!

]]> Comment on People Like Me by Henry Cant http://neurocentre.com/community/?p=487&cpage=1#comment-451 Henry Cant Wed, 04 Aug 2010 22:05:21 +0000 http://neurocentre.com/community/?p=487#comment-451 Oh yes I forgot to mention, after the keyhole surgery I had internal hemorrhage ,had 4 units of blood pumped into me,my lower back was Black and Bluethrough the internal bleeding Q: Is it possible that an internal hemorrhage can cause damaged nerves VERY INTERESTING.I FEEL SO INCENSED that I did not follow up my own Observations at the time and listened to my past experiences with the now well used saying " Trust me I'm a Doctor" instead of "LIsten to me I Am the patient" I'm now beginning to understand the meaning of Purgatory and Incarcerated Ps I think I will apply again for the 3rd time for a Blue Badge and tell them I can now only walk 46 yards.......One yard over the maximum to find out wHeather these RULES are really for the GUIDENCE OF WISE MEN OR THE OBEDIENCE OF FOOLS. Oh yes I forgot to mention, after the keyhole surgery I had internal hemorrhage ,had 4 units of blood pumped into me,my lower back was Black and Bluethrough the internal bleeding Q: Is it possible that an internal hemorrhage can cause damaged nerves
VERY INTERESTING.I FEEL SO INCENSED that I did not follow up my own Observations at the time and listened to my past experiences with the now
well used saying ” Trust me I’m a Doctor” instead of “LIsten to me I Am the patient” I’m now beginning to understand the meaning of Purgatory and
Incarcerated
Ps I think I will apply again for the 3rd time for a Blue Badge and tell them I can now only walk 46 yards…….One yard over the maximum
to find out wHeather these RULES are really for the GUIDENCE OF WISE MEN
OR THE OBEDIENCE OF FOOLS.

]]> Comment on Understanding Neuropathic Pain by sharon hobson http://neurocentre.com/community/?p=498&cpage=1#comment-446 sharon hobson Tue, 27 Jul 2010 10:31:36 +0000 http://neurocentre.com/community/?p=498#comment-446 Forgot to mention - Have just been to see another Consultant at Leeds General and have been prescribed Duloxetine. Forgot to mention – Have just been to see another Consultant at Leeds General and have been prescribed Duloxetine.

]]> Comment on Understanding Neuropathic Pain by sharon hobson http://neurocentre.com/community/?p=498&cpage=1#comment-445 sharon hobson Tue, 27 Jul 2010 10:29:15 +0000 http://neurocentre.com/community/?p=498#comment-445 I have just seen the video and it has been very helpful to finally hear other people describe what I have been going through for 6yrs!. The pain is 24/7 and no cause. years of frustration, disappointment, and a trail of different consultants etc. I take dihydrocodine 60mg x 3 times per day with co-codamol 30mg x2 in between. Still the pain breaks through. Have tried all the others mentioned such as gabapentin, pregabalin, amytryptaline etc. Had a break down in october, trying to carry on as normal through the pain so now on sertraline antidepressants. I now listen to my body and pace myself. I also try to find something each day to do that I enjoy. Its very very difficult living with PN and some days I dont want to live anymore - I grieve the life that I once had. It is also difficult to make other's understand. So thankyou for the video. Now I don't feel as alone. Thankyoyu I have just seen the video and it has been very helpful to finally hear other people describe what I have been going through for 6yrs!. The pain is 24/7 and no cause. years of frustration, disappointment, and a trail of different consultants etc. I take dihydrocodine 60mg x 3 times per day with co-codamol 30mg x2 in between. Still the pain breaks through. Have tried all the others mentioned such as gabapentin, pregabalin, amytryptaline etc. Had a break down in october, trying to carry on as normal through the pain so now on sertraline antidepressants. I now listen to my body and pace myself. I also try to find something each day to do that I enjoy. Its very very difficult living with PN and some days I dont want to live anymore – I grieve the life that I once had. It is also difficult to make other’s understand. So thankyou for the video. Now I don’t feel as alone.
Thankyoyu

]]> Comment on Understanding Neuropathic Pain by Sue C http://neurocentre.com/community/?p=498&cpage=1#comment-444 Sue C Mon, 26 Jul 2010 09:58:56 +0000 http://neurocentre.com/community/?p=498#comment-444 I am currently researching why my husband is in so much pain, so undiagnosed at the moment. Awaiting a series of hospital appointments, having done the rounds of GP. Very frustrating!! Having seen your video which was very enlightening, I feel that I have more information and can now only try and keep my husband encouraged until his hospital appointment. Cannot understand why he has not ben referred to pain clinic? Your video helped me and rang a few alarms bells at the same time! Thank you, I am currently researching why my husband is in so much pain, so undiagnosed at the moment. Awaiting a series of hospital appointments, having done the rounds of GP. Very frustrating!! Having seen your video which was very enlightening, I feel that I have more information and can now only try and keep my husband encouraged until his hospital appointment. Cannot understand why he has not ben referred to pain clinic?

Your video helped me and rang a few alarms bells at the same time!

Thank you,

]]> Comment on People Like Me by James Gell http://neurocentre.com/community/?p=487&cpage=1#comment-440 James Gell Wed, 21 Jul 2010 19:49:39 +0000 http://neurocentre.com/community/?p=487#comment-440 It is a post code lottery Henry. Received my blue badge within a week of applying. I have had focal neuropathy for about 14 months affecting the thighs and the abdomen. On really bad days often brought to tears. Seem to have tried every drug, acupuncture, spinal pain block but so far no good outcome. I do not know what other sufferers think but I am so frustrated that with such unbelievable pain there is nothing to show for it on the outside. It is a post code lottery Henry. Received my blue badge within a week of applying. I have had focal neuropathy for about 14 months affecting the thighs and the abdomen. On really bad days often brought to tears. Seem to have tried every drug, acupuncture, spinal pain block but so far no good outcome. I do not know what other sufferers think but I am so frustrated that with such unbelievable pain there is nothing to show for it on the outside.

]]> Comment on Pain In The Spotlight by Donna Galek http://neurocentre.com/community/?p=67&cpage=1#comment-439 Donna Galek Tue, 20 Jul 2010 13:03:09 +0000 http://neurocentre.com/community/?p=67#comment-439 I have had an allergic reaction to anti-biotics which has left me with neuropathy. It is on the mend as the pain I suffer now does not make me cry anymore but I still get a lot of different sensations in my arms, legs, hands and feet. I have seen an Immunology Consultant and have been told to wait a couple more months before being referred to a Neurologist. Nobody really explains or is interested. I feel very alone. I have had an allergic reaction to anti-biotics which has left me with neuropathy. It is on the mend as the pain I suffer now does not make me cry anymore but I still get a lot of different sensations in my arms, legs, hands and feet. I have seen an Immunology Consultant and have been told to wait a couple more months before being referred to a Neurologist. Nobody really explains or is interested. I feel very alone.

]]> Comment on People Like Me by Henry Cant http://neurocentre.com/community/?p=487&cpage=1#comment-438 Henry Cant Sun, 18 Jul 2010 21:16:00 +0000 http://neurocentre.com/community/?p=487#comment-438 Had an Operation 2004 unsuccesful keyhole ,had open surgery hours later to retify keyhole surgery had blood tranfusion 4days in intensive care complained for the last 6years about numbness and pins and needles in both feet had you usual MRI nerve conduction studies drugs galore ,even sleeping tablets as the leg pain is unbearable,can hardly walk MORE THAN 150YARDS without the use of a walking stick,my balance is getting worse by the week,I'm told there is NO Cure.I applied for a Blue Badge to assist in getting around and improving my quality of life because of the walking difficulties, I am now on Morphine Patches Had my reply from Blue Badge Team 13th July2010 YOU DO NOT QUALIFY QUOTE "YOU MUST BE UNABLE TO WALK OR HAVE DIFFICULTY IN WALKING DUE TO A PERMENANT AND SUBSTANTIAL DISABILITY " cAN ANYONE OUT THERE QUANTIFY THE DIFFERENCE BETWEEN NO CURE AND DIFFICULTY IN WALKING !!?? I HAVE Peripheral NeuroPathy. Cause Unknown !!!??? Had an Operation 2004 unsuccesful keyhole ,had open surgery hours later
to retify keyhole surgery had blood tranfusion 4days in intensive care
complained for the last 6years about numbness and pins and needles in both feet had you usual MRI nerve conduction studies drugs galore ,even sleeping tablets as the leg pain is unbearable,can hardly walk MORE THAN 150YARDS without the use of a walking stick,my balance is getting worse by the week,I’m told there is NO Cure.I applied for a Blue Badge to assist in getting around and improving my quality of life because of the walking difficulties, I am now on Morphine Patches Had my reply from Blue Badge Team 13th July2010 YOU DO NOT QUALIFY QUOTE “YOU MUST BE UNABLE TO WALK OR HAVE DIFFICULTY IN WALKING DUE TO A PERMENANT AND SUBSTANTIAL DISABILITY ” cAN ANYONE OUT THERE QUANTIFY THE DIFFERENCE BETWEEN NO CURE AND DIFFICULTY IN WALKING !!?? I HAVE Peripheral NeuroPathy. Cause Unknown !!!???

]]> Comment on People Like Me by Henry Cant http://neurocentre.com/community/?p=487&cpage=1#comment-437 Henry Cant Sun, 18 Jul 2010 20:52:11 +0000 http://neurocentre.com/community/?p=487#comment-437 Is there a support grou in or near Barnstaple North Devon Is there a support grou in or near Barnstaple North Devon

]]> Comment on New Pain Video Published by Allyson Kaufmann http://neurocentre.com/community/?p=509&cpage=1#comment-432 Allyson Kaufmann Thu, 15 Jul 2010 12:44:21 +0000 http://neurocentre.com/community/?p=509#comment-432 I have experienced this pain now for many years but the last two very severely. I find the use of Lidocaine patches exceedingly helpful (they are anaesthetic patches) but they need to be prescribed by a Pain Clinic. My feet also feel so much better during the day. Hope this helps. I have experienced this pain now for many years but the last two very severely. I find the use of Lidocaine patches exceedingly helpful (they are anaesthetic patches) but they need to be prescribed by a Pain Clinic. My feet also feel so much better during the day. Hope this helps.

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