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Neuropathy Pain

V

Virginia

Active Member
Messages
32
Location
Blackburn,lancashire.uk
Hi I wondered if anyone had any suggestions as to what I can do to help my Neuropathy.This last few months I have only managed to get a couple of hours sleep a few nights of the week.Most of the time I just try reading,listening to my relaxation tapes and wait until the 4 hours are up and I can have more Tramadol!!.I'm on the maximum dose of Pregabalin and Cymbalta,as well as my other Meds,I'm even trying Neurophen in between but nothing will stop the pain in my feet and legs.I sleep with my feet almost on the floor most of the night but they get so cold,even with 2 pairs of socks on.Our Practice Nurse says the Circulation is ok and theres nothing I can do,but the Podiatrist I see every 6 weeks says thats not good enough and he could see how tired I was.I've lost almost 2 stone but its in inches I'm loosing I've gone from size20/22 to 16/18 in about 2 months.It's getting me so depressed.I've told the nurse AGAIN about my blurred vision and she said thats for the optician to see and again says I haven't to test my BC and won't let me have strips,I'm actually going to buy some when I get my next pension.I just wondered if anyone could suggest anything.I did go to one of our GPs as suggested in an earlier post,I hadn't seen him before and he just handed me a prescription for Tramadol.I'm so tired,sorry if I've gone on a bit .Virginia.
 
Hi Virginia,

I'm sorry you're having such a bad time of it. Hopefullly one of our members who has suffered from neuropathy will comment with some advice. In the meanwhile, can I ask how well controlled you are? Getting your sugars down if they are high may help things. Also, I would suggest you ask for a referral to a specialist if you haven't had one already.
 
Virginia said:
Hi I wondered if anyone had any suggestions as to what I can do to help my Neuropathy.This last few months I have only managed to get a couple of hours sleep a few nights of the week.Most of the time I just try reading,listening to my relaxation tapes and wait until the 4 hours are up and I can have more Tramadol!!.I'm on the maximum dose of Pregabalin and Cymbalta,as well as my other Meds,I'm even trying Neurophen in between but nothing will stop the pain in my feet and legs.I sleep with my feet almost on the floor most of the night but they get so cold,even with 2 pairs of socks on.Our Practice Nurse says the Circulation is ok and theres nothing I can do,but the Podiatrist I see every 6 weeks says thats not good enough and he could see how tired I was.I've lost almost 2 stone but its in inches I'm loosing I've gone from size20/22 to 16/18 in about 2 months.It's getting me so depressed.I've told the nurse AGAIN about my blurred vision and she said thats for the optician to see and again says I haven't to test my BC and won't let me have strips,I'm actually going to buy some when I get my next pension.I just wondered if anyone could suggest anything.I did go to one of our GPs as suggested in an earlier post,I hadn't seen him before and he just handed me a prescription for Tramadol.I'm so tired,sorry if I've gone on a bit .Virginia.
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There are a few options that that might help your neuropathy, your GP ought to really be trying them as a matter of course.
I have suffered with neuropathy for years, though it's not so bad now and sometimes almost non-existent. My GP prescribed Gabapentin (http://www.everydayhealth.com/drugs/gabapentin) which is a drug that was initially used to treat seizures and fits, but also helps with nerve disorders and neuropathy. That made me quite sleepy, but it did relieve the pain too.
I found that a cream called Capsaicin (http://altmedicine.about.com/od/complet ... _cream.htm) was very good at stopping the pain. It takes a few days to become fully effective but it did the job without any side effects. It is made from chilli peppers and works by creating a constant sensation that leads the brain to ignore the feeling. As the brain starts to ignore the heat of the chilli, so it also ignores the neuropathy.
Maybe you might be able to mention these to your GP, or ask to speak to a diabetes specialist about the management of your neuropathy. It's a very common diabetes side-effect and I'm surprised that a GP isn't too bothered about it.
 
Hi thanks for your posting.I was refered Jan 20010 when I was diagnosed.I went to the Diabetic Clinic at the Hospital and the Specialist said Because I had Arachnoiditis,from the Myodil Dye,that was the cause of my Neuropathy.He was happy with the way I was keeping my Diabetes under control(even though I'd only had one visit to the Diabetic Nurse at our Surgery!)and that because I was under a Neurologist I needn't attend the Diabetic Clinic again unless I developed Complications.A month later and I went for my appointment with my Neurologist,and after telling me on my previous appointment that the Dye was causing everything including the Arachnoiditis ,Fibromyalgia and Neuroathy's.He just said that he'd noticed about my Type 2 Diabetes and therefore decided THAT was the cause of everything and discharged me from his Clinic and said the Diabetes Clinic would now take over!!!I was so upset I couldn't say anything for a while even Richard, my husband was upset.The result is now I just see the Diabetic Nurse every 6 months In October she said my HbA1c was 6.8 and that was fine,I wasn't to test my BG(no need and expensive!).So, now I'm under nobody except her and don't see her till April!When I saw the GP I had to see the new one in the practice who had no idea about my History and he 's the one who gave me Tramadol.I was on Gabapentin but the weight just piled on so thats when I changed to Pregabalin.I just feel in Limbo,I've been on Beta Blockers for 15 yrs,but whenever I've asked to have my BP checked I just get "why"!yet I know it's still high at times and trying to keep calm is really hard.Thanks for listening I just want to move home ,hopefully next spring,then get a GP who I can talk to and not just be given yet another drug,at the moment I'm taking about 20 a day,7 different Meds and then Painkillers.So New Year new start,I hope.I'm going to lie down now, I've been up since 3am,again!
 
So sorry for your problems -its a horrible feeling not knowing where to go for advice and not feeling up to all the battles .

I should definiely ask to be referred to Diabetic clinic again. You are no longer seeing the neurologist!

regarding the BP I would suggest that you get yourself a bp monitor- you can get them very reasonably if uou look for discounts , preferably on the large pharmacy companies sites. Under a tenner. Make sure you get one with a cuff - not the wrist type.
Then record your BP every day at same time for about a month. Then ,if it is high. you will have some
evidence for Gp or nurse.

Although some don't really like to accept home readings they are now being told to do so. In any event if you present them with some evidence they will not be able to ignore you. Just take your readings along and ask if they seem OK. Good luck with it all.
 
Hi, just read your post, I know exactly how you feel, I have had Adhesive Arachnoiditis for 20 years, I had a long hard fight just to get a diagnosis, which is NOT officially accepted by the NHS, secondary conditions are impossible to investigate and treat, I bought a blood pressure monitor that had very high BP readings so my GP had to refer me to the hospital for a barrage of cardiology tests including wearing a 24 blood pressure monitor, I also had chest pain, they said everything was normal but told me to keep taking the blood pressure medication, the consultant said they found something in my blood that needed investigating but that was the last I heard, it took me over a year to get the test results and my GP said it was my cholesterol and go to a lipid clinic, I said you must be able to test Cholesterol, so he done a non fasting cholesterol blood test that came back normal, some time later I started going through the results and saw a very high reading of Triglycerides, and googled it, it is a type of fat in your blood that can only be measured in a fasting blood test, the upper limit is 1.9, mine was 11.4, I wrote to my GP to highlight this and he said we need to do a fasting blood test that came back 24.2, crazy, you can actually see the fat sit on top of the blood sample, he referred me to a Biochemist, he done no further testing and said it was an inherited condition, no one in my family has it, and I was 50 years old it would have been picked up years ago, and the level was far to high to be inherited, I was put on Fenofibrates and Fish Oil capsules, that did not work, they put me on the highest dose and still with diet it would not come down, last reading was 9.0, I done some research and discovered people with chronic pain and autonomic dysfunction have problems with hormonal imbalance, raised stress hormones, cortisol , adrenaline etc, I had said to the biochemist I read that raised triglycerides were linked to raised cortisol and insulin, eventually leading to insulin resistance, pre diabetes then type 2, he didn't disagree, and that's now what happened to me, I have been referred to a diabetes clinic, mornings only, I cant do morning, takes me until about 2pm to feel human and mobile, and what are they going to do for me? I can have a bottle of wine and a very big high carb supper and get a fasting reading of 7.0, then eat a very little high protein supper and get a fating reading of 12.7, it just don't make any sense, its not normal diabetes, the system that controls all hormone release is badly damaged so I cannot control it, I think if I eat what I want I am happy, not stressed, and my body does not thinks its starving and dont get the liver to dump a load of sugar in my blood my insulin cannot use, I wish you all the best, you are not alone.
 
Virginia said:
Hi I wondered if anyone had any suggestions as to what I can do to help my Neuropathy.This last few months I have only managed to get a couple of hours sleep a few nights of the week.Most of the time I just try reading,listening to my relaxation tapes and wait until the 4 hours are up and I can have more Tramadol!!.I'm on the maximum dose of Pregabalin and Cymbalta,as well as my other Meds,I'm even trying Neurophen in between but nothing will stop the pain in my feet and legs.I sleep with my feet almost on the floor most of the night but they get so cold,even with 2 pairs of socks on.Our Practice Nurse says the Circulation is ok and theres nothing I can do,but the Podiatrist I see every 6 weeks says thats not good enough and he could see how tired I was.I've lost almost 2 stone but its in inches I'm loosing I've gone from size20/22 to 16/18 in about 2 months.It's getting me so depressed.I've told the nurse AGAIN about my blurred vision and she said thats for the optician to see and again says I haven't to test my BC and won't let me have strips,I'm actually going to buy some when I get my next pension.I just wondered if anyone could suggest anything.I did go to one of our GPs as suggested in an earlier post,I hadn't seen him before and he just handed me a prescription for Tramadol.I'm so tired,sorry if I've gone on a bit .Virginia.
Click to expand...
 
hi i see this post is from 2011.iv not long joined so maybe youmay be able tohelp me.i to have nuropathy to feet and now hands and legd.i ham serverly overweight and i dropped from 23 stone to 19,felt grate,sgar levels wher stable and all was good.untill the nurophty got really bad in feet and leg.iv gone from walking 3/5 miles every day to needing i crutch to even walk a few minuits,then im in pain and out of breath,the 3 stone i lost has flew back on and even more.when i got diagnosed with type 2 i realy changed my lifestyle and ate right,but when i felt great and lost all the wieght i then thought """ oh im ok now and hit the beer and the ****** food.the nurse has said,you have doneit b4 so you can do it again,meaning loose the wait ans stop the drinking and eating ****** food.
But the nuropathy has progressed that much,that im struggling to even get up and down the stairs.i take amryfilamine if thats howyou spell it,plus progabron,and full strenth co codomal in between.i hope you have found somthing that has helped you and i really hope this message gets to you seing it was posted 2011.but in the hope it does.i would be ovrwealmed if you would reply.on here and my e.mail [email protected]
many thanks Neil
 
Virginia said:
Hi I wondered if anyone had any suggestions as to what I can do to help my Neuropathy.This last few months I have only managed to get a couple of hours sleep a few nights of the week.Most of the time I just try reading,listening to my relaxation tapes and wait until the 4 hours are up and I can have more Tramadol!!.I'm on the maximum dose of Pregabalin and Cymbalta,as well as my other Meds,I'm even trying Neurophen in between but nothing will stop the pain in my feet and legs.I sleep with my feet almost on the floor most of the night but they get so cold,even with 2 pairs of socks on.Our Practice Nurse says the Circulation is ok and theres nothing I can do,but the Podiatrist I see every 6 weeks says thats not good enough and he could see how tired I was.I've lost almost 2 stone but its in inches I'm loosing I've gone from size20/22 to 16/18 in about 2 months.It's getting me so depressed.I've told the nurse AGAIN about my blurred vision and she said thats for the optician to see and again says I haven't to test my BC and won't let me have strips,I'm actually going to buy some when I get my next pension.I just wondered if anyone could suggest anything.I did go to one of our GPs as suggested in an earlier post,I hadn't seen him before and he just handed me a prescription for Tramadol.I'm so tired,sorry if I've gone on a bit .Virginia.
Click to expand...



hi i see this post is from 2011.iv not long joined so maybe youmay be able tohelp me.i to have nuropathy to feet and now hands and legd.i ham serverly overweight and i dropped from 23 stone to 19,felt grate,sgar levels wher stable and all was good.untill the nurophty got really bad in feet and leg.iv gone from walking 3/5 miles every day to needing i crutch to even walk a few minuits,then im in pain and out of breath,the 3 stone i lost has flew back on and even more.when i got diagnosed with type 2 i realy changed my lifestyle and ate right,but when i felt great and lost all the wieght i then thought """ oh im ok now and hit the beer and the ****** food.the nurse has said,you have doneit b4 so you can do it again,meaning loose the wait ans stop the drinking and eating ****** food.
But the nuropathy has progressed that much,that im struggling to even get up and down the stairs.i take amryfilamine if thats howyou spell it,plus progabron,and full strenth co codomal in between.i hope you have found somthing that has helped you and i really hope this message gets to you seing it was posted 2011.but in the hope it does.i would be ovrwealmed if you would reply.on here and my e.mail [email protected]
many thanks Neil
 
Hi Neil

I feel your pain mate as I suffer form neuropathy too.

There is a lot of information in the complications section in a thread called " Help in dealing with neuropathy"

What I would summarise from that is that neuropathy will get worse whenever you're BS level goes above 7.8 - the spikes 2 how after meals are the killers here.

Some people believe they have been helped by supplements (I am one of them) but others have not.

But all agree they will not help unless you have good control of your BS levels.

I achieve that by LCHF principles but I am also taking metformin.

I do not find lchf too onerous either - I have never actually come off the beer for example although I have changed from real ales to less carby ones.

Don't let it get to you mate, there is hope.
 
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