crystalgal
@crystalgal
@crystalgal
Posts: 10
Joined: Sep 30, 2012
@johnwburns I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren’s syndrome. I take gabapentin and duloxetine but pain isn’t the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you’ll have better luck with the chemo induced version.
Best of luck with your chemo. Hope it doesn’t include taxol or taxotere as there seems to be a strong link between that family of chemo drugs and peripheral neuropathy
crystalgal
@crystalgal
@crystalgal
Posts: 10
Joined: Sep 30, 2012
@bobsconnect I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I’m seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.
I also have autonomic/peripheral neuropathy caused by chemotherapy in 2006. It has progressively gotten worse during the last 3 years. So far lucky that I have the numbness and not the shooting pains. However, when you can’t feel your feet, it’s difficult to walk without falling frequently. I have PN in the first joint of my fingers, but can still do buttons, zippers, etc. If/When I can’t do those things, I will be researching the adaptive devices that will allow me to be continue to be as independent as possible. Best of Luck .. ps I will be 69 this month. I also have other health issues and agree that we will be dealing with some level of impairment going forward
crystalgal
@crystalgal
@crystalgal
Posts: 10
Joined: Sep 30, 2012
@johnbishop About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I’ve come to regret it a little since it’s gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I’m waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it’s associated with pre-diabetes but I’m not buying that diagosis just because I’ve had it for a long time and do not have diabetes. I think it’s related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I’m really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening…praying that you all will find some relief.
I spent $3500 at Realief In Brooklyn Park, MN last summer. I have feeling in my thighs and legs now, and some i my feet. Yes. it is expensive for the treatment and maintenance, but I was falling 6 to 7 times a week on a regular basis and at 68 years old I felt there would come a time where I wouldn’t bounce so well. The debilitation from breaking a hip, for example, would cost me a lot more than a lifetime of Realief. Giving it a try was certainly worth it for me. As the saying goes “I ain’t well, but I sure am better.”
Liked by John, Volunteer Mentor
crystalgal
@crystalgal
@crystalgal
Posts: 10
Joined: Sep 30, 2012
@johnwburns The neurologist has me on mycophenolate and the rheumatologist thinks that augmenting it with plaquenil might be worth a try. Plaque nil can rarely be cardiotoxic so need to have the cardiologist weigh in on that. Per the latest EMG, my issues haven’t gotten any worse in the last couple of years. They have no idea why, maybe a lot of walking. They are 80/20 sure its caused by Sjogren’s. There’s an outfit called The Foundation for Peripheral Neuropathy which might be able to provide some information. Of course they want donations. I have a TENS unit. Good idea. Might be worth a try.
hope to get a rollator with a seat this week so that I can walk much more safely
melperez1223
@melperez1223
@melperez1223
Posts: 9
Joined: Apr 08, 2017
I was recently diagnosed with peripheral neuropathy and autonomic neuropathy. I’ve had pain in my feet (primarily left), knees, hands, chest pains, heart palpitations and dizziness. Nerve conduction tests were negative, but my Neurologist performed 5 punch biopsies from my ankle up to my upper arm and they all came back positive for small fiber neuropathy. I am taking 600 mg of gabapentin for 2 weeks and will move up to 800 mg 3 times a day. I have primary Sjogren’s syndrome.
swiss
@swiss
@swiss
Posts: 19
Joined: Mar 21, 2017
I am Swiss, born in 1939 and have been diagnosed idiopathic polyneuropathy some 13 years ago, the illness progressed slowly so that i now have regular chronic pain which can move from 2 to 9 out of 10 at certain times such as after a sleep change horizontal to vertical. Only cold – warm baths of feet and leggs can influence it positively although I am on a daily medication of 400mg Palexia retard (an opioid), 350mg of Lyrica and 900mg of Gabapentin. I do not like this quantity of chemistry having to pass through my system, I guess my liver does not like it either. Only under certain circumstsances and by medical
prescription can we obtain the new medication based on Marihuana, I wonder what could help such attacks, it is like a flame is passing through the feet into the leggs and back with burning and itching pain. It may stay with me for a few hours or go away within 30min – 1h. The bilateral knee arthrosis does not help to make my walking any better, I have been using a walking stick in particular when taking my doggie for a walk. Cold is my biggest enemy so that I have created all sort of socks out of thermal leggins or similar material covering parts or the leggs or all of it, thicker or tinner, depending of the season.
My neurologists never have an idea how to fight my chronic peripheral nerve pain, Lyrica seems to be the state of the art and all kind of other trials
did not show any improvement other than Opioids which I would like to avoid and slowly move out of it. For that I will go back to a hospital in order to check what could be reduced first and in what relationship to the rest. Anyhow is is frustruating and I wonder if anyone has some new idea, I am also read anytime to answer questions you may have by mail. felix
Liked by Colleen Young, Connect Director, peggyj4411
gratefulone
@gratefulone
@gratefulone
Posts: 3
Joined: Apr 09, 2017
@lindy1956 My husband had Guilliane Barre Syndrome in 2013, he is now dealing with residuals. Hands, feet and belly pain are the worst. It seems we have tried everything but neuropathy in his feet is bad. Does anyone else have GBS or CIDP? We are always open to suggestions.
I also have CIDP. It’s been 3 years of ups and downs. I’ve been on Plasma Exchange until that stopped working. In July 2016 I ended up at Mayo/ St Mary as a quadriplegic and started a series of IVIG treatments. After 18 days there and rehab I walked out using a walker. I get 30g of IVIG weekly, 1200mg gabapenten 3 times a day, Cymbalta and Azathioprine. Today I can do most normal activities but I still have PN in my feet. I do take my time walking and try to watch where I’m going. My neurologist says the numb feet are a gift from CIDP.
Liked by Colleen Young, Connect Director
crystalgal
@crystalgal
@crystalgal
Posts: 10
Joined: Sep 30, 2012
@lisamaria I developed peripheral neuropathy because of chemo. My oncologist says the only thing studies have proven effective is gabapentin (neurotoxin) It doesn’t work for everyone and if the dose isn’t high enough it won’t work at all. I think it has gotten slightly better but my fingers and toes and soles are pretty numb and cold makes it worse. I know others suffer more severely and at least I’m not in pain but you might want to ask your doctor about medication. I’m glad to read above there may be new treatments down the pipe. Ones based on science, not snake oil
I also have chemo induced peripheral neuropathy (as well as autonomic neuropathy) which has worsened since 2006 . After 15 Laser and soft tissue treatment this past fall, I regained some feeling in my feet and big improvement in my legs and some in my fingers. I consider myself one of the very lucky ones because so far I’ve only had a couple of extreme pain episodes.
I have participated in Physical Therapy since completing the laser treatments to work on balance and strength. Even though I have improved in those areas my dynamic balance is still poor, so I’m purchasing a rollator with a seat today to improve my mobility and let me get out of the house and take part in some activities … like walking safely. Although I can walk very short distances unaided, and quite a bit longer with my walking stick or Nordic Pole trekking sticks, when I tire, neither are enough to keep me from falling —- thus the seat on the rollator.
Liked by John, Volunteer Mentor
crystalgal
@crystalgal
@crystalgal
Posts: 10
Joined: Sep 30, 2012
@swiss I am Swiss, born in 1939 and have been diagnosed idiopathic polyneuropathy some 13 years ago, the illness progressed slowly so that i now have regular chronic pain which can move from 2 to 9 out of 10 at certain times such as after a sleep change horizontal to vertical. Only cold – warm baths of feet and leggs can influence it positively although I am on a daily medication of 400mg Palexia retard (an opioid), 350mg of Lyrica and 900mg of Gabapentin. I do not like this quantity of chemistry having to pass through my system, I guess my liver does not like it either. Only under certain circumstsances and by medical
prescription can we obtain the new medication based on Marihuana, I wonder what could help such attacks, it is like a flame is passing through the feet into the leggs and back with burning and itching pain. It may stay with me for a few hours or go away within 30min – 1h. The bilateral knee arthrosis does not help to make my walking any better, I have been using a walking stick in particular when taking my doggie for a walk. Cold is my biggest enemy so that I have created all sort of socks out of thermal leggins or similar material covering parts or the leggs or all of it, thicker or tinner, depending of the season.
My neurologists never have an idea how to fight my chronic peripheral nerve pain, Lyrica seems to be the state of the art and all kind of other trials
did not show any improvement other than Opioids which I would like to avoid and slowly move out of it. For that I will go back to a hospital in order to check what could be reduced first and in what relationship to the rest. Anyhow is is frustruating and I wonder if anyone has some new idea, I am also read anytime to answer questions you may have by mail. felix
A joint study by the University of MN (USA) and Realife (Brooklyn Park, MN) was published in a peer reviewed journal a couple of months ago which indicates Laser IV had a positive effect on a large percent of the participants. I believe it was a 3 year study. The bad parts are that the treatments are currently not paid for by insurance, there are only a few locations that use the Laser IV, and the treatment is still a long way off from being accepted as a protocol. I suspect it will need to go through the Level I, II, and III clinical trials before then.
Of course, funding for these trials will probably be problematic as it is not a drug and the pharmacy industry has the deep pockets to fund clinical trials.
I have a reprint of the study (which of course is pretty technical), and I will seek approval to scan and post it on this and other peripheral neuropathy sites.
swiss
@swiss
@swiss
Posts: 19
Joined: Mar 21, 2017
thank you for this valuable info – in fact I have 30 years of experience of lllt (low level laser therapy) and am just constructing a laser which is scanning the beam over an arey you can determine, I will use the length of my leggs and irradiate over the feet as well – trying to apply about 4 joules/cm2 on the area, of course it is a self financed project based also on work done by Juanita Anders, Ph.D., Prof. of Neuroscience, Edw. Hébert School of Medicine, in Bethesda, Maryland, I am in contact with her to develop a protocoll, of course this is private and willl not be followed by a publication, however you may, at some later time, find laser therapists in the US that will perform lllt. I will be glad to receive a copy or scan of the publication you are mentioning and will, when back home, look for the one I have from the US. I know a few internationally reputated MD`s and Laser Therapists who all encouraged me to try out which I will be doing soon. Stay in touch, best wishes.
Liked by John, Volunteer Mentor
swiss
@swiss
@swiss
Posts: 19
Joined: Mar 21, 2017
@swiss I am Swiss, born in 1939 and have been diagnosed idiopathic polyneuropathy some 13 years ago, the illness progressed slowly so that i now have regular chronic pain which can move from 2 to 9 out of 10 at certain times such as after a sleep change horizontal to vertical. Only cold – warm baths of feet and leggs can influence it positively although I am on a daily medication of 400mg Palexia retard (an opioid), 350mg of Lyrica and 900mg of Gabapentin. I do not like this quantity of chemistry having to pass through my system, I guess my liver does not like it either. Only under certain circumstsances and by medical
prescription can we obtain the new medication based on Marihuana, I wonder what could help such attacks, it is like a flame is passing through the feet into the leggs and back with burning and itching pain. It may stay with me for a few hours or go away within 30min – 1h. The bilateral knee arthrosis does not help to make my walking any better, I have been using a walking stick in particular when taking my doggie for a walk. Cold is my biggest enemy so that I have created all sort of socks out of thermal leggins or similar material covering parts or the leggs or all of it, thicker or tinner, depending of the season.
My neurologists never have an idea how to fight my chronic peripheral nerve pain, Lyrica seems to be the state of the art and all kind of other trials
did not show any improvement other than Opioids which I would like to avoid and slowly move out of it. For that I will go back to a hospital in order to check what could be reduced first and in what relationship to the rest. Anyhow is is frustruating and I wonder if anyone has some new idea, I am also read anytime to answer questions you may have by mail. felix
do you have a list of pain reducing medications used in the USA mainly for pain in idiopathic polyneuropathy? I would like to compare this with the most common medicine in Switzerland (Gabapentin, Pregabalin) they do not really work on me. With opioides I have some releave but I hate to depend on it for much longer.
swiss
@swiss
@swiss
Posts: 19
Joined: Mar 21, 2017
@lisamaria I developed peripheral neuropathy because of chemo. My oncologist says the only thing studies have proven effective is gabapentin (neurotoxin) It doesn’t work for everyone and if the dose isn’t high enough it won’t work at all. I think it has gotten slightly better but my fingers and toes and soles are pretty numb and cold makes it worse. I know others suffer more severely and at least I’m not in pain but you might want to ask your doctor about medication. I’m glad to read above there may be new treatments down the pipe. Ones based on science, not snake oil
Most interesting, this is the 2nd on Laser Therapy, thanks a lot – I have just replied to another one, see on Mayo Clinic Connect, These support my effort to make my own laser with high output and possibility of scanning the legs and see what happens!do you no longer need any pills such as Lyrica and other?I am still trying to get off Opioids and this may be the answer.Nice to hear you have succeeded to get rid of the pain – does it last you think or will you repeat the treatment?
Liked by John, Volunteer Mentor
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6363
Joined: Jul 23, 2014
@lindy1956 My husband had Guilliane Barre Syndrome in 2013, he is now dealing with residuals. Hands, feet and belly pain are the worst. It seems we have tried everything but neuropathy in his feet is bad. Does anyone else have GBS or CIDP? We are always open to suggestions.
Hi @gratefulone, @jazzy27 and @lindy1956.
I just tagged you in a discussion about CIDP where you’ll meet others talking about this condition. Hope you’ll join us there:
– Anyone been diagnosed with CIDP? http://mayocl.in/2m6rsMw
Liked by John, Volunteer Mentor
jczarkowski1270
@jczarkowski1270
@jczarkowski1270
Posts: 25
Joined: Jan 27, 2017
@melperez1223 I was recently diagnosed with peripheral neuropathy and autonomic neuropathy. I’ve had pain in my feet (primarily left), knees, hands, chest pains, heart palpitations and dizziness. Nerve conduction tests were negative, but my Neurologist performed 5 punch biopsies from my ankle up to my upper arm and they all came back positive for small fiber neuropathy. I am taking 600 mg of gabapentin for 2 weeks and will move up to 800 mg 3 times a day. I have primary Sjogren’s syndrome.
I had some type of neuropathy for about two years, not much help from local University Medical area, then research food medicine. Turmeric helped, a small daily dose. And started a supportive spiritual communication in Philippines on line, helpful. Was short of traveling to Mayo. Recovered from neuropathy in about two years. Recently with some dizziness(again, a foggy term: can be veritgo(positional ), imbalance(proprioceptive), but with second inspection to my MRI over a year ago(first by Radiologist), and now Neurologist), seems no physical cause(tumor or bleed). The symptoms of dizziness are less, and good sign in neurology. Much research on science level in food medicine today, and don’t over look spiritual support systems, even if you do not believe. JIM>>>>
Liked by John, Volunteer Mentor
@crystalgal
In reply to @martid
Thank you for the information.