People Like Me
December 2, 2009 by admin
Filed under Supporter's Corner
I am not living
I just survive
Trying hard to stay alive
With an illness they call Neuropathy
Which will not usually mean the death of me
The pains and sensations are agony
The smallest draught
Is like fire
My flesh will burn and I will perspire
My feet feel screwed up and very twisted
So normal activities become short listed
With Neuropathy Sleep is hardly ever
As the pain at night is most intense
Which does not seem to make any sense
The body screams in agony as the awful pains wash over me
My muscles spasm my flesh it burns
My legs and feet I cannot feel
I really wish this was not real
The pain it travels up my spine
To my brain like a force gale 9
Surging forcing electric agony
Of course it will not be the death of me
But is this good living I say no but just the same on I go
Up in the morning I look great
Nobody in the world would know my fate
So please remember the word Neuropathy and that out in the world
There are people like me
Written by Belinda Rimmer at 4 am on Monday 16th November
Belinda have just read your poem – you have described exactly what I go through each day – 7 years of this hell so far!
Its good to know that you are not alone. Thankyou
Wow!!!!! Belinda you described it to a ‘T’!!! Sharon, hi also, I’m so glad I’m not alone. Any one else suffering badly with this cold weather?! Not sure if it’s just a diabetes thing as well as the intense pain, but I’ve just about ground to a halt. Nice warm bed and radio 4 & 7 for most of the day, the odd toilet and meal break thrown in. Off gabapentin(making me morose) amytriptyline hardly denting it, Pain management consultation pending, Lol!!! Any one for TENS?!
David
I have just joined this website and the first thing I read has left me somewhat apprehensive and depressed.
For six years I was treated under the assumption that my PN was inflammation of the Myelin. Various tests and medication showed nothing.
A year ago my Consultant retired and I was referred to another Consultant, reputed to be a specialist in PN.
After the usual tests he said I should have a biopsy on a nerve in my lower leg. He told me that in fact the biopsy showed that my PN was of the Axonal type.
I am curious as to the sort of lives the above correspondents lead. Are they married? Do they have to use wheelchairs to get about? Are they aged?
My Axonal neuropothy has no discernible cause. I am having severe problems with feet and legs up to the knee. My Consultant says I am one of 25% of PN patients for whom there is no treatment and has referred me back to my GP with advice about pallatives.
Finally I notice the emphasis that NP is not a terminal disease. That is one thing I do not have to worry about as I also have Pulminary Fibrosis,also not curable but certainly an eventual cause of death !!
I have similar tales of woe as David Sharp and I commiserate. I too had the same problems with Gabapentine and amyltripline! Anyway, I would be interested to know if anybody has trouble getting their GP’s to prescribe drugs, originally prescribed by their Hospital Consultants and does anybody use Lidocaine patches on their feet at night? I have been told by my local PCT that they will not fund them! Does anybody else have the same problem? King’s prescribed me with the patches and they are helpful but the Bromley PCT won’t let me have them OR Pregabalin and Mirapexin as they are too costly! I don’t know where to go at the moment, just living on Tramadil and feeling pretty fed-up. Allyson
I can empathise with Howard Goddard. Although I do not suffer from PN my husband has been diagnosed 3 months ago after having collapsed and being in intensive care for 2.5 weeks (he has had Multiple Myeloma, (a blood cancer for which he has received chemotherapy and a bone marrow transplant and which is treatable but not curable)since 2007. Although I cannot fault the great care he has had from both King’s and the Macmillan unit at Medway Maritime Hospital for his cancer treatment, for the past 3 months it has been the PN which has caused him most distress because he cannot walk at all and is unable even to move himself from bed to wheelchair. The physiotherapy he has had does not seem to be helping much either. The neurologist who diagnosed the PN told us that they cannot pinpoint the cause of the PN and are also unable to say whether it will ever be cured…it’s just a matter of time – it may get better or it may never get any better. I joined this site because I need to be able to ask the right questions of the specialists, on behalf of my husband,as to the best way forward for him but it looks as if he will just have to learn to live with it! But I’m not giving up hope and I pray that all you other sufferers of PN do not do so either.
having suffered from rheumatoid arthritis for 15 years with the pain being so bad i could no walk for weeks on end but my company stood by me.during this time having taken all the medication given to me by r/a consultant who kept me out of a wheelchair along with my determination to beat the pain,i was nether told icould end up like i am now.6 monthsago i started to have very strong pains in all joints,had 2 sessions of cortizone injections,and my methertricate stopped to try a new drug.but my blood tests showed irregulities with my liver so i could not try a different drug,at the same i stearted to get pins and needles and sharp knifing pains in my right foot and also certain fingers felt numb on the skin.i went into hospital where things went from bad to worse,first my right foot went completely dead with a foof drop then my other foot followed suit,but.then both my hands went dead i was deverstated and still am.i was told what i had was a r/a reaction i was not what i had,and thought the tablets i was such as gabapentin would control the problem and i would get back to near normal as usual,i was in denial.after 4 months i received anappointment with a neurologist who dropped the bombshell that what i had was incureable and my life as i knew it was over,no job, no car etc and the worse thing of all is not to take my wifes face in my hands and feel her faces and know her tears.i have now left work after 43 years,istay in bed most of the to stay warm which keeps some of the pain away .i amtaking 40mg of morphine,6×300 mg gabapentin,4×500 mg mycopholate,steroids,,flecanide,fusamide,lansoprazole,parracitamol and now an antidepressent called amitriptyline which even though i am not depressed could help me,but they are going to take me of morthine which helps me through the night.as all of you,i don’t know whatthe future holds me and my wife as we have both had our worlds thown upside down in different ways.i was looking forward to spring and summer to sit in my garden but does the heat affect the condition i’m hoping it does but some of comments say diferent..my best wishes to everyone and if anyone as similiar conditions to me please comment and give me som advice……..mick braimbridge leicester
I have been told that I have Peripheral Neuropathy, it is suppoosed to be due to Diabetes type 2, but I have also been taking Atorvastatin which can cause the numbness and pain etc which did start before I was diabetic. The thing is the tablets can also cause diabetes too. Now I am in a dilemma as my statins have just been changed to simvastatin and I am worried in case something else affected me from them. It is awful to think that the tablets in the first place may have given me both the diabetes and Peripheral neuropathy!! The pain is worse at night and it takes me a long time to get to sleep. It hurts to walk, all the time too. My toes have gone clawed and some of my toenails have thickened. The fingers on my right hand are also affected and sometimes
when trying to open jars and things they get stuck, its horrible.
My husband had been suffering since before christmas with various symptoms ranging from a numb chin, with tingling to pains in his limbs, pain worse at night, severe headaches, loss of co-ordination. His condition deteriorated over time and we were both frantic with worry about what could be the cause. The blood tests all came back clear, MRI scans clear so the doctor was dumbfounded and eventually referred us to the neurologist. He seemed just as baffled even though by now the pain my husband experienced was so intense we had to call an ambulance and morphine did not touch the pain. We searched on the website and came across this site that seemed to match my husbands symptoms. However his condition deteriorated again and in a couple of weeks he had lost 2 stone, although still had a swollen belly. His hearing started to go, his eyesight and co-ordination too. We went to A & E but all blood tests came back normal and we were sent home, we went to the doctor but was told whatever it was would probably get better of its own accord. We got referred to the pain clinic as by now my husband was suicidal with the pain – however that appt is 2 months away!!!!!! In desperation I booked an appointment with an accupuncturist and in a two hour appt she believed my husbands problem lay in his heart, kidney, or liver. The next day my husband then had another severe pain attack this time in his legs and chest, again we called the ambulance and up to A & E. They repeated the blood tests they had done a week before and discovered his heart, kidney and liver were not working properly. The final diagnosis is that he has Acute Lymphoblastic Leukeamia – this type of cancer grows in the cells in the bone marrow and tries to burst out – hence the pain like your bones are breaking. It cannot be detected until it breaks out into your blood stream. Unless you have a bone marrow biopsy. Then it grows quickly so must therefore be treated immediately. My husband was lucky to survive the weekend! I just wanted to let others know who may be visiting this site that yes cancer may be unlikely but do check the symptoms you are experiencing as we were led to believe my husbands problem was neuralgic but it was leukemia and was not spotted although the symptoms were there, if someone had just put 2 and 2 together
Sorry to hear of your husband’s ordeal Annette. I had Chronic Myeloid Leukaemia diagnosed in 2002 which did not respond to Glivec or Dasatinib (each considered the best treatment of the time). By 2006 it changed to Acute Myeloid Leukaemia for which I was given a stem-cell transplant from a 29 year old German woman who saved my life. I am now 69 and have had 3 full years with no trace of Leukaemia in my bone marrow.
However the chemotherapy treatments I was given before the transplant have caused Peripheral Neuropathy.This affects my feet and ankles which are numb and have constant pins and needles and/or a pain such as after extreme cold. Often my feet feel as though they are very cold when they are actually warm. Every so often I have a sensation like an electric shock in my lower leg. When my feet are bare the pain is more severe so I wear socks or shoes all the time. Pregabalin helps a bit and I also find that holding my toes and pushing them hard against my hand eases the pain a little.
Luckily my condition is still mild and I hope will not get any worse.
It seems wrong to say that I’m glad there are others out there suffering with the same thing…but it is nice to know I’m not alone, and I’m not crazy or a raging hypochondriac! I suffered from horrendous pain in my feet ankles and legs for 2 years. I was working in a shop & hairdressers where I was on my feet ALLday. By the time i got home at night I was crying with pain, trying to sleep was nigh on impossible and comfort shoes?? Forget it, theres no such thing.I had many blood tests, all clear, tested & treated for arthritis and carpel tunnel, to no avail, the pain was still there. Eventually I was sent for electrical testing, where I finally got my diagnosis. I was so happy, I finally had an answer!however, as I am only 40 , I am a curiosity as they cannot seem to find a cause, I have had MRI scans, countless blood tests- ongoing- and apparently I am really healthy!! I started on Gabapentin, that worked, but I didn’t get on with the side effects. Fortunately for me, I know someone who works in pharmaceuticals and they recommended I ask for Pregabalin (Lyrica) which is a newer and more superior version of Gabapentin. It is expensive,and some Drs may be reluctant to prescribe,so you do have to ask for it (which I did) I have been on it now for nearly 2 years, with little side effects (altho for the first few months I did feel really spaced, but that was actually quite nice!) it took a while to find the right dose, as the higher it was the more forgetful and confused I appeared ( or maybe thats just the onset of getting older??)It mostly reduces my pain levels to a 2 or 3/10, sometimes I have days where it shoots up to a 9/10, especially when cold, I wear ski socks and big fluffy slippers around the house and walking my gorgeous dog is blighted with pain..but after nearly 4 years, you just learn to live with it, what other choice is there. I cannot remember a day without pain though, and that is sad. I think the worse thing about this condition, is that I look good,well and healthy, so I mostly shut up, who wants to hear from you daily that your feet hurt..like hell, they burn, they tingle, you can’t bear anything to touch them, you get random shooting pains, my knees and ankles ache, even my hands and elbows!and you can NEVER EVER wera nice girly shoes again!! A positive outlook is essential, even though sometimes you may feel why? whats the point? Do what you most physically can, surround yourself with pleasures that you CAN do and enjoy those, adapting is key… I hope that has been of help to anyone who took the time to read my long winded story! I wish all of you out there, suffering with PN from whatever cause, a way to manage your symptons xxxxx
I have just read, with interest, the many comments on periphial neuropathy.
Thank you everyone for your interesting and informative words.
I have been having different problems since my late 20`s (I`m in my 50`s now) and have never been told for certain what I have wrong with me. I`ve been `labelled` as having congenital myopathy (which covers a multitude of conditions) and that there isn`t a cure. I have been back and forth to my GP and consultant, had electrical tests done, muscle biospy and countless blood test.
I now don`t bother with the health service that is why I was I found all the comments so helpful. I sometimes felt as though I was such a fraud for having these symptoms and having nothing to show for them.
Thank you and my best wishes to you all.
I have both neuropathy and tinnitus.No definitive diaganosis of cause hasever been established and it took a long time to get to any doctor who did not thinkn I needed to be seen by another tryp of specialist and so on…Eventually I go to a paincontrol doctor who put me on lyrica.I now take lyrica along with amytriptline anc klonazepam. Things are under control, but I worry about when I will get too used to these drugs.
Through the British Tinnitus Siciety I have learnt that a pharmaceutucal co called Merz is clinal trialling anew drug for both tinnitus an neuropathic pain. Has anyone else hear about it? In deed is there anyone else with both neuropathic pain and tinnitus?
Thanks and my best wishes to all who suffer neuropathic pain – its not well understood by Doctors and not understood at all by those who do not have it!
Stephanie… your last sentence says it all.. thankyou for pointing that out.
I am thinking of writing a diary/blog of this condition and its daily effects, if anyone would like to contribute any stories, ideas, tips etc I would be interested to hear from you, or if anyone knows of any support groups or the like please let me know.. my email is sam.cerridwen@googlemail.com
like samantha i am hoping to form group in leicester i am hoping to keep in touch with samantha with news my email address is michaelbraimbridge@yahoo.co.uk
It helps to know others have problems of neuropathy. We need treatment that lets the brain work OK. Pain is difficult and those without it think you can do anything. I explain but they don’t comprehend. At meetings and with friends I wince with pain and can’t wait to get home which doesn’t solve it. Doctors saw soldiers in the 40s had problems with neuropathy injuries. Neurological problems are dealt with for dope addicts. Help commoners handle pain they inherit, get from diabetes, injuries and more. Misery loves company but you aren’t successful. MN’s senator Amy Klobuchar tried to get a neurology ammendment passed with a health bill Dec. 2009 but it was defeated. Senator Al Franken is humane too. Peck at the right people. They pass legislation for obvious pain that returns big money.
I have lived and worked in Oman since 1991. In 2002, at the age of 53, my realisation that something was wrong was when I was on the beach and I didn’t relise how hot the sand was and had burned and blistered my feet so it really made me sit up and wonder what the hell was wrong with me. Previously I’d had really weird pains and sensations in my feet and legs. I went to the doctor and was referred to the neurologist at the local hospital and was given the electric test (ESM?) – basically I was plugged into the mains. Thankfully my husband was with me to comfort me. I am not diabetic so not sure how I got this devil. When I saw the neurologist again, armed with a list of questions on the progression, leading life etc, he either wouldn’t or couldn’t answer our questions. I was given a prescription for gabapentin, of which I take 6 per day now, and that was that. I’d never heard of this PN, it was like ‘GOD what am I going to do?’ Thankfully I found the Neuropathy Trust on the internet and it has saved my life in knowing that I’m not alone. Three years ago I hurt my foot, different kind of pain, so went to the hospital, a new one. I was x-rayed and found to have broken toes. The best thing about this was that the doctor asked when I had last seen a neurologist. I relayed the story about my previous neurologist and he insisted that I see their consultant neurologist. Amazing! This neurologist actually knew what I was going through and asked me to have the electronic test – I refused at first after telling him of my past experience. He assured me that this would be different. I must admit that it was an easier experience and my husband was amazed at the difference of the technician carrying out the test. I have damage to my spine also from an accident so the neurologist organised a Disabled sticker for me and my automatic car as I can’t walk far (I think that I am the only Brit here with one). I still work and have a very supportive team around me so I’m lucky in that way. They know I have a ‘condition’ but I’m sure they don’t have a clue even though I try to explain. I lose my balance sometimes and have fallen down the stairs a few times. I use the lift at work and we now have a single story house. To date, I have never met or heard of anyone here with PN so am really appreciative for the Neuropathy Trust and the message it gets out so more people are aware of the conditions and pain we all go through and to try and find more medications to treat the symptoms and help with the pain. Good luck to everyone out there with PN – God Bless.
Neuropathic pain has taken me places that defy description, and that’s just it with pain, it is so difficult to describe.
The usual phrases are quite accurate, ‘electric jolts’, ‘stabbing’, ‘burning’, ‘burning-cold’, and good ole ‘pins’ and ‘needles’.
Not to mention the odd sensations, the ‘creepy crawlies’ ‘masks’
But I’ve come to like the point system, the 1-10 scale, only because it helps me cope with the pain. I only describe a 10 if asked to.
Stephanie, I have both tinnitus and neuropathy. I have meniere’s disease. I’ve been diagnosed with a hereditary neuropathy, HNPP, my Doctors say that it is unrelated to Meniere’s disease.
I’ll put it down to a run of bad luck… more like a marathon.
I was told by my doctor that I have Morton’s neuropathy in my feet. Lately it’s gotten worse. The last letter described it very well; electric jolts, stabbing pain, burning and numb feelings in my toes. Many night this pain won’t let me go to sleep. From reading the describtion of this condition, mine sounds like it could be something else. This affects both of my feet and it’s not just in my toes. It’s the whole foot. Has anyone else had this happen to them?
Is there a support grou in or near Barnstaple North Devon
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 !!!???
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.
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.