Intense neuropathy chronic pain....help

[Ginakins]

My neuropathy is only getting worse. The severity of the pain in my hands it just to much. Can't see my new pain management dr for 2 more weeks. I haven't met anyone that has the pain to the extent of mine. They have no cause. I want to find out the cause BUT they have to give me something for pain besides the insanely low amount of oxycodone he allows me. Any thoughts as to what kind of dr does all sorts of testing on spine, blood work to check for toxins etc. I feel like I'm really losing my mind

[luckyjim]

Gina

There is no valid reason why your pain meds can't be increased, even as a temporary measure..

Your GP obviously doesn't understand your difficulties .See another doctor within the practice or change practices.

Best Wishes

Jim

[southernbeau33 in reply to luckyjim]

I completely agree Jim. I had to double my dose of oxycodone (extended release) just before Christmas up to 100mgs twice a day, and my doctor was happy to do so provided we had a plan in place for me to reduce it gradually thereafter. I'm now down to 80mgs twice a day and should be dropping to 70mgs shortly.

I probably didn't go about it the right way, as I just started taking double and made an appointment to see my doctor to tell him that was what I had done, but there is no reason you should be left in so much pain.

You must not take 'no' for an answer from your doctor. Take care and my thoughts are with you.

Jess

[ednu16]

Is there a specialist pain nurse with the pain management team? They can also give you medication advice also?

I also started out with painful neuropathy in my hands and right arm. It was excruciating and got weakness in the arm. I was in and out of hospotal and the Drs were baffled. It is much better now but I also had no cause. I had many tests (MRI scans, nerve conduction studied, lost count of blood tests) and all were within normal limits or negative. It took a long time to come to a conclusion and a lot of self motivation and assertiveness but got there. I want you to know that there is a possibility there may not be a true root cause but that does not mean things cannot get better or more manageable.

Some pain Drs do not use a large amount of pain relief for neuropathy because of research but they may talk to you about alternatives. Have a look at some information about it so when you do see them you can make informed and empowered decisions, I found hat helped me keep strong.

You are not loosing your mind, you are no doubt tired, stressed and concerned but, you are definitely NOT alone.

All the best

[johnsmith]

See a Chiropractor. Pressure on nerve roots can cause pain.

[Cb1963]

unfortunately neuropathy is trying to understand the condition,I've suffered with it in my lower legs and feet and yes the pain is intense and sometimes think it would be better of having them amputated,it's constant and never forgiving,and I struggle getting my head round this condition,as you would of thought in this day and age that there's a pain killer/medication that can ease the pains,but nerve damage is very difficult to treat,so pain clinics and seeing your GP must be at the top of your list,or a psychologist and having a talk about your condition,I sometimes get it down my arms and into my hands and that's a real shocker,as I thought I was having a heart attack as the pins and needles were horrendous,so my tests came back normal after a scan,but it was the old fashioned test a bit like the Americans have to do the road side sobriety test and basically nearly falling over having to walk in a straight line with my eyes closed,try everything that's available medically available,tens machine,lidocane patches,anti depressants,which are used at night time to help with sleep,there's alot of different tablets out there and it might take months to find something that takes the edge off your pains,but be under no illusion that it's a guaranteed cure,also try to avoid alcohol and smoking as I believe this can impare nerve damage,I'm sorry its probably not the most uplifting response that you'll receive,but as we all respond to medication differently you might hit the jackpot and be pain free,I wish you all the best towards being pain free,thanks

[Cb1963]

I forgot to mention as for causes,working with metals and being a heavy drinker's have been known to suffer more commonly with the condition,I don't really no anything else really towards causes but I'm sure there will be plenty of other lifestyle habits that probably contribute to this condition,it's a lottery with it I suppose,thanks again

[Carla_Leinwander]

I Ginakins, I know what neuropathy pain feels like. I have hereditary peripheral neuropathy with pressure pallsies in my feet, and I have lived with it for 34 years. I was diagnosed by the doctors at Mayo Clinic, the best in the country, who informed me with 2 babies at home that I would never have normal mobility again, and who suffer from chronic pain for the rest of my life. It devastated me, and I think I am still grieving. My life hasn't been the same since. I have to constantly monitor how much time I spend on my feet to manage the pain. I take Nucynta ER for my pain, and it is wonderful!! Expensive, but good. No side affects, it is like taking an aspirin. It comes in different strenghts, and is specially geared toward neuropathy. You might see if they will prescribe it for you and give it a try. Neuropathy is one of the most painful things a person can experience, and I don't think anyone who hasn't experienced it knows to what extent we who are lucky enough to have it suffer. I feel your pain. I have dealt with the agony for many years, so if there is anything I can suggest or do for you just reach back out to me through this website and I will try and help. I know it hurts, I know it does. It is awful. Try and take it one day at a time, one minute at a time, and if at all possible, don't let the pain consume you, which is so easy to do. It not only affects us, but our loved ones around us. My children grew up watching their mother crawl on her hands and knees and sit in a wheelchair. I used to think I wasn't giving them what they needed as a mom because of my pain, but they grew up to be strong courageous adults. Couldn't be prouder of them. So hang in there, don't let the pain win. You are stronger than it!! You can do it!

[Cb1963 in reply to Carla_Leinwander]

was just reading about your medication and as a fellow sufferer living in the UK l will be making an appointment will my GP,asap I've not heard of this medication so a little information is a big tool in maybe combating this constant pain issue I've had,I've been told that if after a certain period the symptoms are still persisting then there's little hope of the condition getting better,I feel I've been forgotten about within the health system here,and like you say nobody knows how painful this condition can be,so thanks for your snippet of information,and maybe others have some input about the drug your currently taking and wether any uk sufferers have received this medication,thanks again 😊

[Carla_Leinwander in reply to Cb1963]

Don't give up. It can get better. I have had good periods and bad. It is never going to go away for me, but I have to control my pain also my controlling my mobility. I have been in a wheelchair but I have also been on a bike and have ridden across states and ridden 160 miles on my bike in one day. Find a doctor who is familiar with your condition. They are out there. Few and far between, but they exist. Don't let yourself be forgotten, make them listen to you. There is help out there. And you are right, no one knows unless they have lived it. Let me know if I can do anything for you!! Hang in there!

[Ginakins in reply to Carla_Leinwander]

Carla_leinwander. I've been meaning to get back to you. The pain has been torture for over a week. Actually months. I can't type tonight but I want to thank you. Your reply to my post really touched me. I would like to talk with you about your experiences. Tried the med your on. Can't take it. I need some darn relief! New pain management dr on the 28th. Can hardly wait to get another "can't help you" crap. I'm hanging by a thread. How long have you had it? What kind of pain are you in? Is it in your hands also? It's wonderful you found a med that works. I've tried so many things and treatments, infusions, and others and nothing. No one wants to help. I'll write more as soon as I can. Pain dictates time.....everything else in my life. Literally.

Ginakins

[Carla_Leinwander in reply to Ginakins]

Okay, my story is long so settle back with a soothing cup of tea and try and calm. You are frantic and feeling alone and that no one can help you. I have been there before, and I know what helplessness and pain and desperation feels like. Was the medicine not strong enough, or did you have a reaction? I have had my neuropathy for 30 years in my feet, and it has left me crippled, disabled. I have to control the pain by how much time I spend on my feet. I also have it in my left wrist, (carpal tunnel), and in my upper back and I get shocking below my ankle bones. It seems like most of the people I have talked to on this site are in the UK. Do you have money to travel to find someone that can help?

The doctors at Mayo Clinic in Rochester, Minnesota, USA, finally diagnosed me after they performed the 3rd failed surgery. Up to that point I had had numerous cortisone injections into my feet, and two previous surgeries. My "episode" before they operated began when I was five months pregnant with my second baby, and I went through the rest of my pregnancy in excruciating pain, bearing more weight and fluid build up in my feet due to the pregnancy. I can't even describe the horror of it all. I went to every doctor I could find, BEGGING for relief. No one knew what was going on with my feet and due to being pregnant would not touch me. I finally went up to Mayo Clinic when Abby was 8 months old and they performed the third surgery. Three weeks postop my feet started to feel numb and then very painful. I called and asked them, "could it be the nerves"? They replied absolutely not. Well, the pain did not get better, and after several expensive trips back up there, more shots in the feet, total immobility for 30 days, (in Dec., Christmas with 2 babies), and painful physical therapy, they told me, "you were right, we were wrong, it is the nerves. Your condition is genetic, there is nothing that can be done, you will have compromised mobility and chronic pain for the rest of your life. Read the Bible, we don't know why some people have to suffer. If we cut the nerves back any farther you would loose the motor control in your legs. Just what a mother of a 3 year old and an eight month old wanted to hear. I could go on and on. I have spent years in a wheelchair, but someone introduced me to cycling. I couldn't walk but I could peddle. Have ridden across states, and in the Rocky Mountains of Canada. I have done the RAIN ride, which is 160 miles, one day, one way, across the state of Indiana, USA. I have had IV drug infusions for the pain, topicals, and they even did ECT on my damn brain, yes, I was stupid enough to go along with that one!! I was pain free for three weeks after they zapped my brain to oblivion. But I am a fighter, and you have to be one too. Pain can take everything away from you if you let it. I look at it as a competition, and I am not going to let it win. It has taken enough from me. Keep looking until you find someone to help. A general practitioner is probably not the answer. Do research, look for a neurologist who specializes in neuropathy. I know every day is a struggle, I still have pain every day and have to monitor what I do. I still grieve, and still get angry. But HANG IN THERE, don't give up. I know it sucks, I really do. Reach out to me anytime you have to let the rage and frustration out. I will always reach back, Carla

[Ginakins in reply to Carla_Leinwander]

Thank you so much Carla. You leave me speechless. Your illness ....you've been through slot. You have a great frame of mind. I'm not like that. I'm not "ok" dealing with all this. I'm overwhelmed. Way to much. Research? That's ALL I DO. If able to scroll and type. We will travel. Now I'm afraid of Mayo Clinic. I need to find out the cause. How do they check for toxins? I was also told there wasn't a cure and it would only get worse with time. Had it in my feet about 11 years ago. Was diagnosed by my neurologist. My feet are totally numb. I feel nothing. My hands started about 2 years ago but completly manageable except they felt cold and I couldn't feel so I can't cook, oven, anything involving heat or cold. I was in the hospital for 12 days in august for edema. Since I got out, they pain started to get worse very fast. By October I was crying in pain and a lidocaine infusion put me over the edge. BAD thing to do. My pain went from a 10 everyday, all day and night without a min break, to a 50+ and hasn't stopped.

I'm in the US also. I have to go. Been nauseous all day. No sleep. I don't get much. I'll reply more soon. Understand your in a good place right now. I'm not even thinking positive. I live in hell right now. I'm thoroughly exhausted.

Gina

[Carla_Leinwander in reply to Ginakins]

Oh Gina, you touch my heart. If you live in the USA, go to Mayo Clinic!!!!!!!!!!!!!!!!! Do not be afraid. I was diagnosed in 1991, and I have been encouraged by other physicians to go back, that was several years ago and they might be able to help me. I have had 25 years to come to terms with this. I still grieve and I still get angry. A friend of mine has been in ICU, and I watched the nurses walk and looked at their shoes and I wondered if they appreciated their feet and that they could walk so quickly without pain? The pain has been so bad that I would have rather had prosthesis's and had my feet cut off. My chronic pain has pretty much destroyed my second marriage. BUT-life goes on and we have to live it. Yes, the people without chronic pain and who have their health are blessed, and if they haven't been sick or in pain they take it for granted. I still fight every day to get the most out of life that I can. The pain is always going to be there, but I do appreciate the "good" days. My eighth month old learned to crawl by watching her mother. I was mad as hell at a GOD who would take away a mother's feet who had two small children at home. I was afraid I was so focused on my pain and my despair and my depression when they were little that they were not getting from their mother what they needed. But they turned out to be courageous and brave and able to face obstacles and be independent. If I hadn't gone to Mayo Clinic I would have never gotten answers, even if they were not what I had hoped for. They told me I would not find a doctor within 500 miles who would have even heard about my condition. If I could, I would go with you!!!!! I care about you and I will not forget you. Please keep in touch, for I will worry about you if you do not. I have had "gut" issues for months, have had two CAT scans, an Endoscopy, X-rays, scripts, supplements, different doctors yadayada....It is time to look elsewhere. Never ever give up! I won't let you. A fellow cyclist wrote me an email that said, "Carla, good luck with everything. You are a fighter and have learned to adapt and endure, there isn't anything in life that can keep you down. Cheers, Don" Amen to that, sister! It is not always going to be this bad. If possible, get your butt up to Mayo. They are the best doctors in the country. Get some answers, and possible relief! Your pain and circumstance has touched my heart, and now I am crying. Rely on good friends, they will help. Sorry my responses are so lengthy, I have had all this stored up for many years, and want to help you if I can! Keep going forward!!! Yes, I have done more physically than I ever thought possible, and movement and exercise is everything to me. When I first started cycling, I saw blue sky, felt the wind, smelled honeysuckle, and I felt alive for the first time in years. And I was good at it-the guys would get mad because they couldn't keep up-loved it haha

PS-neuropathy can occur wherever there is entrapment of nerves, like wrists, ankles, feet, shoulder blades...and trouble sleeping is a common symtom of neuropathy sufferers. I am sure you all ready know this.

[Ginakins in reply to Carla_Leinwander]

Carla

Thank you so much. You get it! The pain is so severe in my hands. Looked into Mayo Clinic. All of them are very far away. Don't have the $ for it. I need to see if someone here can first figure out why I got this So I can get treated properly. But I need pain medicin NOW!!! I can not live with this stinging, burning, freezing, needles, electric shocks, so much more. It's taken over my life! I want to go through every test to see how I got it. Don't know where to start. I'm so glad your in a happy place now.

I don't have any friends. I had to eliminate a few people cuz they were making my stress too high. I have my boyfriend, Aunt, and dad. That's it. I wish I could meet people or someone that understands my pain.

I'll write more later. To painful right now.

Thank you so much.

Gina

[Carla_Leinwander in reply to Ginakins]

Gina,

How old are you? Hereditary Neuropathy hits in adolescence to early adulthood. Mine started when I was 25. The why might not be as important as the what can I do to fix this awful shit??"!! I will always be here for you. Reach out anytime, and I will be checking in. When I was pregnant with Abby and the "episode" hit me I was exactly as you are. In excruciating pain, and no answers. Begging every doctor I could find to please, please, help me! The moral of the story? It can get better. Right now take it a minute at a time. Do not listen to negativity that it isn't going to get better. It can and it will. You have to believe that. I have learned how to manage it, that is all. And sometimes I overdo and I pay for it. Don't give up. Just don't give up. And you have met someone who understands your pain. Me. More than you know. My husband does not understand my pain. No one can really relate unless they have experienced the horror of it. Write when you are feeling up to it and let me know how you are. I want to help, if nothing else but to encourage you that there are answers and a better future. Carla

[Ginakins in reply to Carla_Leinwander]

Hi Carla

I'm 49. It's been a few very long days and nights. It's so intense and also the electric shocks are much worse, lasting longer and even more nasty sharp pain. I go Tuesday to new pain mgmt dr. I'm nervous and scared. I want to make sure I have all my questions out there. Any suggestions? Your very lucky to have found a drug that helps you. I'm not having any such luck. In fact, nothing is working cuz they haven't given me stronger pain meds! I'm so tired of the fight. Tuesday. If no answers or no direction, I'm through. I won't be in this amount of pain for the rest of my life. How are you? Where are you in the US? Try and write more tomorrow. Lmk if you have ideas etc or just feel like writing. I may not get right back to you, but that's cuz my hands are to painful to text/write

Gina

[Carla_Leinwander in reply to Ginakins]

Okay, Gina, what does if the new pain management doctor can't help me I am through mean? I take one pain pill a day, and I am not sure if it helps so much as I have just learned to "adapt and endure" as my bike coach tells me. My husband holds the health insurance, and if we end up divorced, I will not have access to this med because it costs $900/month out of pocket for a quantity of 30. This is what I suggest: If this new doctor can not help, look online for the website of the Foundation of Peripheral Neuropathy. I signed up for their "newsletters" and they can send you a list of doctors in your state that specialize in neuropathy. I live in Indiana, and out of all the neurologists there was one in my state who specialized in this area. I know your frustration, I have lived it. When I was pregnant I was in so much agony and pain I didn't know how to live through it. And being pregnant I couldn't so much as take an aspirin. But I had a little being inside of me depending on me and another little "3 year old" outside also depending on me. You will keep fighting until you find help. Because now you have me in your life and I will not let you quit. Not now, not ever. Do you live in a state where marijuana is legal? Have you thought of moving? Because I have. Both my children are now grown, Andy lives in Colorado and has a state badge and manages one of the most successful marijuana dispensaries in the state, and when I am out there I am pain free. Just sayin......I am sorry I am so late in replying but a dear friend of mine and my husbands fell two weeks ago, is 88 years old, and broke all his ribs. His wife is 92, they never had children, all they have in this world is each other. His lungs are filling up with fluid and he is dying. Maggie, his wife, is like a second mother to me, and a dear soul. That is why my reply is late but you have been on my mind and I worry and care about you. I will keep you in my prayers that this new doc will help, but have a Plan B in place just in case-look up that website! Carla

[Ginakins in reply to Carla_Leinwander]

Carla. Pain mgmt dr today couldn't be any worse. They can't/won't help me. My primary wants me gone but he can't "fire" me so I'm done. No more options. Pain went into "a spike" as I call it. The stinging got worse. This happens all the time. They will not help me. I'm out of choices. I've tried everything and everyone and now I don't even have my primary helping me. I have to go. I have not stopped crying since 3/4 through the appt at 9:00. My hands are screaming right now. I am numb inside.

Gina

[Carla_Leinwander in reply to Ginakins]

All right, Gina, I am going to help you. I refuse to believe there are not options out there for you. What is wrong with these doctors that they won't help you? Do they just turn you away-say get out? There are more people than you know suffering from nerve pain. It is one of the worst pains there is. What is the state that you live in? I am going to see what I can do. I generally don't take no for an answer. Just got rid of one pain dr. because the wait was about 4 hours for 5 seconds of his inadequate time. He was a joke. They kicked me out of their office 3 times, because I wear my feelings on my sleeve, don't hold much back. First we try and relieve the pain. There are also pain management counselors out there to help. Chronic pain, as you and I both know, can become your life. Can over take your life. We have to end that cycle and get some of your joy back. Tell me city and state that you live in and I will go from there. And I won't quit until I find an answer. A dear friend of mine has just been put on hospice and unfortunately we are just waiting for him to die. He is 88 years old, his wife Maggie is 92. Their 65th wedding anniversary is tomorrow, and I don't think Maggie wants to survive without him. He is all she has, they never had children. But please give me your city and state and I will find you someone!!! Due to their circumstance, I might be slower in finding someone, but I will. I get determined, and I am not going to let you suffer. Will be in touch. Don't forget, City and State. Hang in there, Carla

[nedd]

It's a frustrating and depressing fact that lots of us have non specific pain. And that pain is the condition in its own right. Hopefully you will find a cause that can be treated.

But meantime I offer this up. It helped me get my head around pain.

audioboom.com/posts/342315-...