Neuropathy extreme pain

Hi I'm Gina. I have neuropathy and my hands are to the point of excruciating pain. I can't touch anything, do much and all I do is cry, all day, everyday. It got worse a week ago and have been hitting brick walls. Scheduled for a lidocaine infusion Jan 4. I don't know much about it, but I'm not going to make it until then. My pain management dr is away now so I'm basically screwed. I can't take this anymore! Anyone have suggestions or ideas or info on this infusion? I've read about the side effects and I'm not happy. Please help

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  • Ok read your post and 2 things come to mind.

    1. Is there no-one else at pain management that can be spoken to? Can't all be on holiday?

    Can gp prescribe anything stronger for the short term?

    2. ALL treatments and meds have long list of side affects that COULD happen but for the majority of people they don't! Try not to google and remember your doctors wouldn't have suggested treatment if they suspected it wouldn't help!

  • Thank you for replying. No one else at pain clinic will do a thing. Only saw dr once. He offered the infusion and a med. Had my primary research it and by the time he said I should try it, pain dr was gone. I don't know why my primary is making me suffer like this. All I do is cry. My nurse, that comes to my home, is beside herself. Trying to help, calling dr's, to hitting a brick wall. She wants me to go to hospital but they won't do anything. I'm really at a loss. The pain is the worst I ever felt....ever

  • REALLY sorry to hear you are going through this. At least nurse is trying to help. HOPE treatment in January helps.

  • Hi Gina😔

    I'm also suffering from debilitating Forest Fire, being burned from the inside outs with the feeling of little knawing teeth inside of my body especially at my lower back, legs and feet. I'm interested in knowing more about the Lidocaine Infusion you are going to have.

    Are you getting the Lidocaine Infusion done at a Hospital and if so will it be done by a Specialist?

    Also have you ever had any Epidural Injections before to help with your pain?

    I'm sorry for the questions Gina- I feel your pain as if it were my own and can empithise with you completely. I'm as anxious as you are to find out if the Lidocaine Infusion helps you.

    In the meantime Gina, hang in there.

    I feel there is a great Warrior within you.

    Keep the faith that the Lidocaine Infusion is going to help you and your experience with this procedure will be a positive one, perhaps helping many others to inquire. Neuropathic Pain to this extent is a nightmare and I admire you tremendously for being the strong person you are.

    xo

  • I think it's all financial Ginakins, I'm going through exactly the same things as you, I just don't know what to do anymore. I give up on the NHS as it is no help at all anymore. The advice I get is to stop taking the pain meds I've been on for over 20 years. I'm sorry I can't help you but I certainly feel for you, Take care

    Simon.

  • Hi Gina, sorry I just saw your post.

    I too suffer horrible neuropathic pain and four days ago I had for the first time a flare up on both of my hands.

    I've never had this before but my hands, palms and tops, all 10 fingers were burning like hell itself with Inflammation so bad I could hardly bend my fingers and then they also started to itch like the devil. I didn't know what to do either with all Dr.s on holiday and was too stubborn and feeling so unwell I couldn't get myself out.

    I had some old Calamine lotion- slathered it everywhere but to no avail, no relief. I washed it all off with cool water using no soap and slathered my hands wrists and fingers with corticosteroid anti itch/inflammation ointment.

    It settled down after about 48 plus hours. This has never happened to me before but it definitely was neuropathic pain.

    I have no allergies and I didn't touch anything unusual nor was I out and about in any public settings. If you (or I) find out what this horrible neuropathic pain was or why so sudden, perhaps we can post back. Please let me know how you're doing with it. I almost crawled the walls, yes that bad.

    If we have the same thing what made it flare to this excruciating extent?

    I'm feeling your pain. Hang in there.

    xo

  • have you tried pregablin its an expensive med but works to some extent i have same problem in my hands and feet and is now affecting my stomach so get acid re flux this affliction is a nightmare with no cure

  • I've never tried or been offered that med. I can't even talk to my pain mgmt. dr until next Wednesday. They want me to go to the hospital which will do nothin except pump me with a drug and send me home. It's completely taken over my life. I literally can't do anything. My feet have been numb for about 4 years or so. They never went through this "pain" stage. I have no idea why my hands are. I don't sleep and most of what I do is cry. Can't drive etc. I'm so sorry you have it also. What kind of pain (I hate that question also) are your hands and feet like? How long have you had neuropathy? Have you found ANY relief, besides the med? I am a wreck-emotionally and physically. It a battle every hour, not day. Thank you for replying to me. I don't know anyone else that has it and there are no support groups here

  • try and keep hands and feet warm as the cold is an enemy we can do without i have had this for 7 years feet go first then the hands i live in constant pain

    the pain clinic is a joke as it takes a long time to get nowhere i also suffer with lower back sciatica

    most of the time you think you are on your own but try and get a good rapport going with your GP because depression sets in and makes things worse i have been to the stage of wanting to end it and it took a long time to come back from that episode with talking therapy you may think the hospital just wants to pump you with drugs but a few days pain free are good days that helps you recharge before they discharge you and pain takes over your life again

  • Agreed. Pain clinic does nothing. I'm extremely depressed. I've been thing of ending it all because there's only so much a person can take. I have other med problems also so I'm getting hit from all sides. The pain takes over everything. From thoughts to unable to focus on anything but the pain. That leads me to cry almost 24/7. Not even joking. Hospital, I'm sure, won't keep me overnight. They'll pump me with meds and send me home. It will be great while I'm there. Pain fee for a little while would be awesome. It's the after it wears off that's gonna stink. I'm so stuck

  • Hi Ginakins, I'm no medical expert but I suffered horrific pain for over a year in both hands (it felt like someone had shut the door on my hands and kept it there and also hit my 'funny bone' on my elbow!!). Both hands would swell up as well during the day. They did say it was carpal tunnel in both hands (without any tests) and they did a release in both hands. This did help the immense pain, but I'm left with a lower level chronic pain each day.

    What you could try, is hang both your arms/hands over the edge of the bed. This did help with the pain as nothing (even Naproxen) could elevate the pain. (I also try ice packs on both hands to see if that could help).

    Have they done an MRI on your spine/hands?

    Take care of yourself

  • Not on my spine/hands. I don't know why. Have had several MRI's, Ct scans, neurop testing, function test, tons of blood work, hospitalized...you name it, I've done it. Getting no where. Going to try a lidocaine infusion Wednesday. Have many worries about it.

  • Ginakins♡

    Please, can you tell me what kind of Specialist is going to be doing your Lidocaine Infusion on Wednesday? Also I'm very curious to know WHY no Physician has given you an MRI of your Spine?

  • Pain management specialist. Just posted my experience.

  • Where did your Pain Management Doctor post your experience and where abouts is your Doctor? Very anxious to know as I just met another very well informed person who like you and I know just how bad Neuropathic Pain is. It becomes Intractable Pain. ....it never stops. Right Ginakins? Everyone thinks your full of it on one side or think we're exaggerating the burning forest fire that we can not put out anytime anywhere and a full body flare makes one almost suicidal while begging for relief. I'm so happy for you Ginakins 😀

  • I can't find anything that is Posted in regards to your experience from Lidocaine Infusion? Where did your Pain Management Doctor post?

    Keep strong, Ginakins 😔

  • Me again.....You said you had several MRI'S of your spine done. Am I correct in statin this? You need to a) get a copy of each report. Ginakins it's sad what may lay hidden from many people. An unfortunate truth.

  • Pain usually has purpose for example it stops you putting pressure on a broken bone, but neuropathy tells you nothing, your nerves are an extension of your brain so it's possible to use your intelect to fight it. I use a combination of imaging techniques and logic to help with my pain. You say you can't bear to touch things. The solution is to grab something and a squeeze it tight. Then think about the pain you are in and compare it to the pain endured by torture victims all the time keeping in mind that there will be no damage or scarring or burned flesh afterwards. Explore how many peaks of pain you can break through but imagine that the searing highs are part of a cure for the pain you feel all the time. Then relax and re-evaluate your Base level of pain. Hopefully it will be much lower and the fear of touching things reduced. If YOU are in control of making your pain worse instead something you cannot reason with you will own it and eventually control it

  • Huh?

  • I don't know either

  • U don't u just die

    Ya.......you do.

    Just die

  • Agreed 1000%. Die

  • The Human Neurvous System

    Is just that a .....System.

    Takes many, many things to continuously be working together with all thier very unique and important jobs throughout the "entire human body"

    Now Intellect is an entire separate entity.

    Whether one has a very High IQ or not it will have no baring whatsoever on nerve receptors (the ones that tell you I think I have a broken bone!)

    Damaged nerves within the Whole Spinal Cord the whole from "your" large brain down to your tailbone, leaves one incapacitated with pain. Things start happening as the nerve damage is progressive in nature.

    Do look up Adhesive Arachnoiditis.

    Telling that people can pain can be "mentally over come is both wrong and you add insult to injury.

    Thank you

  • Let others on this Support Group for a variety of Painfull Deceases, conditions, syndromes know that your sorry for such a uninformed suggestion that,....with out any accuracy whatsoever was crossing the line.

  • Hi all. An update on my neuropathy. Had the lidocaine infusion yesterday. Was dizzy, headache all day and metallic taste. The pain got 100% worse by 7:00 pm. It's now 3:45 pm the next day and am in the worst pain ever! Called dr office. Waiting for call back. I HATE the pain mgmt dr I saw. Never going back. He is doing NOTHING to help me. Called another pain place. Waiting for records to get to them. I simply can't do this anymore. It's taken over my entire life! I've hit a brick wall. Had little hope the lidocaine would work. Now I've given up all hope. I need relief!!!!

  • Ginakins ♡

    O.M.G.

    Did I just post you with the thinking that the Lidocaine Infusion"helped" you?

    When in fact it did NOT!

    If so, my goodness, I am truely sorry. 😢

    Can we count on "maybe" it gets worse before it gets better for a day or two?

    Did you not have a small test first to make sure you could tolerate Lidocaine?

    Help me understand Ginakins?

    I'm trying Canibinoil now. Thus far it's been helpful in the tiniest of ways, taking just a weeee little bit of the edge off.

    Please let me know how you ate doing? ♡♡♡♡♡

  • Hellohellohello. Thank you. The dr didn't post, I did. Was responding to a comment from before....that's why I said "just posted". Your correct....it DID NOT help. Total opposite. I'm worse than I was BEFORE 9:00am yesterday when they started the infusion at 11:00 am. No, they didn't test s**t!!!!!!! I called the ONLY Dr that you can find online that prescribes medical marijuana. Need to get info from last 3 visits from whoever is treating my neuropathy. Once they get that, the Dr will review it and make an appt. I CANT WAIT TILL THE END OF THE MONTH for relief. Waiting on the jerk Dr (pain management ) to call. I called them hysterically crying almost 6 hours ago to tell them what's going on. Haven't heard a freaking word so called back. Got answering service. Now waiting. I HIGHLY DOUBT the jerk will do anything. I need pain relief NOW. I am qualified to receive Med marijuana because in New York State, neuropathy is a condition eligible for it. It takes time. New York State you can't find a dr that prescribes it, online. Guess their trying to change that law. This guy I called is the ONLY ONE that's online. I have a nurse that comes to my home and she was here today. She WANTS me to try and get my card. My father is here now cuz my boyfriend had to go to a meeting. My aunt is on her way. They all think (although I've never said it to them) I need the hospital and/or think I'm suicidal.

    Where is your neuropathy? How long have you and the other person had this? I don't know 1 single person that has it or can relate. What are the options for med marijuana besides smoking it? How does the oil work? Did it take you a long time to get your card?

    I can't thank you enough for responding to my initial post and every time after.

    I am at the end of my rope. Idk how to get through this. All I do is cry. Nobody wants to help! It's total BS!!!!

  • OK....Ginakins ♡ I'm going to send you a couple of questions in which I previously went into with much detail.

    It never got posted ?!?!?!

    Whom ever is the one whom "reviews" our posts must have NOT wanted me to "let the cat out of the bag" - so to speak.

    Have you ever had a needle of any kind -ever- put in or around any part of your spine from the top of your cervical (neck) to the very bottom (lummbar) including your tail bone area?

    We're you every given a prescription from your PM Doc. to bring with you for any of the injections? Or did he/she already have this medication there?

  • Now you stay with me Ginakins ♡

    How long have you had neuropathy?

    Starting when it was mild, not really interrupting your day/night.

    Pain gradually getting a little worse, (you may have to go back years).

    Still progressing but it's super annoying. Burning starts. When did the burning start?

    I believe you said 4 yrs. ago.

    Nothing before that?

    Small questions fitst but VERY important. Especially how and when did your neropathy start?

  • Just got home from dr. I'll write more in a little bit. In tremendous pain. Got no where. No where. I'm so sick. I can't take it anymore

  • Hellohellohello. Just got to hospital. Waiting to be seen. I'll let you know what's going on

  • Hi. I've had it for 7 years. Started only in my feet. It was mild. But gradually got worse. Never got this kind of pain...ever. It started in my hands about 3-4 years ago. Mild, a wile later tingling and numbness started. About a year and a half ago, the pain started. Mild until march 2016. By august, it was too much pain to handle. Back to neurologist where another set of the conductive studies happened. Went from small fiber neuropat to a higher one. 3 weeks ago they went from being an 8 everyday to a 50+. I thought THAT was the worst possible pain. On Wednesday had the lidocaine infusion and 5 hours after, went to 100 pain and have been there since. I'm getting NOWHERE with ANY dr or hospital. "Learn to live with it" I was told by a top dr in my city. Nice fella. Going to a marijuana dr in a few weeks. It will take weeks to get my card. I am done. Done fighting. I, plain and simple, can not live like this. It's taken over everything in my life. I'm not the only one suffering. My family. The most incredible, patient, caring, man I've ever met. This is BS. NOBODY WANTS TO HELP

    I hope your ok. How have you been feeling?

    Gina ❤

  • It's early in the morning 04:20 a.m. and I've finally gotten my maximum number of hours (almost 3 hrs ) that I'm able to sleep through this hell. I have "Adhesive Arachnoiditis" directly caused from Epidural Steroid Injections with Depo-medrol. It's Intractable Pain never stopping except of course when I'm lucky enough to sleep which is a very rare so I'm constantly sleep deprived. This FOREST FIRE BURNIING LANCIATING NON STOP PAIN IS REALY REALY UNTOLERABLE. I like your self am having a very difficult time to get a Dr.whom will treat me appropriately. I'ts increadable how Dr.s will dismiss this or think it's some sort of "Rare Dinosaur" when it seems like we're crawling out of the woodwork. These Epidurals were always given to me L4 , L5 -S-1.

    Ginakins that's why I was asking you about everything that has happened to or in your spine.

    You have a husband and a Son. Keep them near and dear to you. I never married so no children either. It's a hard road to tow.

    I did go through a hellish time in 2008 with Nerve Entrapment of my Sural nerve.I had surgery to have this nerve "decompressed" and it had been successful for a little longer than was expected. I've developed a small syrinx in my upper mid back which I can manage if I do very little. The burning non stop neuropathic pain is as only as you or I know. It sucks when you get an ass hole like the one I answered.....huh?.... to, that "Ydontujustdie" ones ignorance is astoundingoing. I have siblings that won't take the time out to read up or learn anything about Adhesive Arachnoiditis so a stranger with a very broad audience of people who are Suffering to grab a ball imagine worst shit that a human being can be put through - torture,.....well has a suck mind in my opionion.

    Ginakins ♡ , I know what Intractable Pain is and I understand all to well what your going through. Nerve damage always happens because of injury or insult. Think of everything going back yrs. I don't know if your Epidural was with a oil base dye. I don't know if that insult to your spine would show up 32 yrs. later. Depo-medrol in my case is contraindicated for Epidural and Intrathecal use. So Dr.s who've used this will never ever admit to it, when they precisely know.

    Please Ginakins♡ write a couple things down that you think may of happened and research, ask questions, utubes etc. There is alot of valueable information out there. I'ts a struggle for me to be doing anything really, so I must take my not sweet time. I try as hard as possible to stay Stress Free haha hahaha haha, because stress hits our nervous system.

    Please keep "yappin" with me when you are up to it.

    ♡♡♡♡♡

  • I'm right with you about NOT SLEEPING. I haven't slept since Tuesday night. Got 3 hours this am. The burning,stabbing pain keeps me up. Crying nonstop. I feel horrible for you. Nerve damage, like ours, is by far, the worst pain I've ever felt. And I can't find the shut off valve. The ignorance, like you said, disgusts me. I was almost shocked by their post. Yeah, give me a ball to squeeze and then I'll come after your ass and beat you down! I wish my family would read, research, watch things about peripheral neuropathy. They have NO CLUE except what I say. It hurts me to the core that after all these years and especially NOW, they still won't. It's very hard for me to do research right now while my hands are, what I call, CRISIS mode. So I have to wait. I have to find a new pain dr. I beg and pray everyday to please give me strength, patience and relief a little from this torture. Cuz that's what it is for ME-TORTURE. Fighting a fight I'm not going to win. Lost hope. Lost myself. I have a high tolerance for pain. So my aunt has said that she KNOWS Im in pain cuz I don't usually cry and breakdown like this-ever.

    Stress free. HA. Pretty damn hard.

    Are you in the U.K.? Just curious. Can you tell me some meds you've heard of that they use to treat this? I've tried many. Have had a reaction to all so far. Started to wean off gabapentin. Going to take a while. I feel it's done nothing so why take it. Do you take alpha lipoic acid? They say it works good but hasn't done shit for me. Won't give up on it....yet. It's a natural vitamin. Can't hurt like prescriptions do.

    Do you take any supplements or natural products or alternatives?

    Thank you for listening to me. I literally have or know NOBODY that truest gets it. Or understands. That sucks!

    Hope you had a good day. Talk tomorrow (Monday). Have to TRY and make calls and headway. Yeah, sure.

    Gina

  • Good morning Ginakins 🌞♡♡

    You wouldn't believe what I've been trying to do! Only for a wee bit here and there - there is this television 1/2 hour show on that is called "Sit and be Fit". It"s filmed out of Spokan Washington State, comes on here in Ontario Canada on channel 31 WNED. I'm gathering you are South of the border from my self. To your knowledge might you have compressed nerves anywhere? This Sural Nerve De-Compression I had 7 yrs. ago had some physical therapy involved but went well otherwise. It is a Surgery I had at McMaster Health Sciences Hamilton Ontario Canada. I had a wonderful Surgeon and neurologist and knew very well what was to be the expectation after Surgery, because it was explained to me very well that (I'm going on probably a inaccurate memory but you'll get the idea) the result is of course to be 100% successful but may be only fifty percent better (hell yes, this is good) may not work ( (O.K. better to try than not, the pain then was unbearable) a "slight chance" it get worse. (I had confidence it would work and I trusted and appreciated this Surgeons Honesty) so we went for it. It wasn't expected to be a last forever and everything but I did get almost 7 years of nerve entrapment relief!!! Fantastic !!! But......now it's as before surgery 😭 The worst Forest Fire (not candlelight burning) but flipping Forest Fire constant Burning is now radiating from my lower lumbar spinal nerves down both my buttocks, hurts my sit bones something terrible, down my legs ( I've seriously been in so much pain I want my limbs amputated!!!) There is nothing like it. This Adhesive Arachnoiditis willrarely be admitted by the Medical community because it's only cause is nerve clumping inside the Spinal Cord itself. This can only be caused by injury or insult. (eg: bad physical accident one was in and had Failed Back Surgeries or in the days Doctors uses a oil based dye to do myelograms. That contrast dye is no longer used. Now the hidden secret is Epidural Steroid Injections with Depo-medrol has shown thousands upon thousands of people ending up with AA sometimes years latter. My days are not often tolerable, I have no quality of life and nobody seems to give a shit about this "manmade" crisis that's world wide. I want to post you some utubes that many Doctors have made to get the "truth" out there about the off label use of this medication - which is both Intrathecal and Epidural use, yet Dr.s are still using it for "off label use". It must stop pure and simple. AA is a irreversible permanent injury due to the nerves actually getting "glued" together in the Spinal cord because the Epi (which means above or outside - epidermis - "epi" the most outer part of our skin.) So that's pretty much it and nothing can be done except to try and treat the Intractable Pain. I've met only one other person Ginakins ♡ besides yourself - that gets Lidocaine Infusions and uses Canibinoil and perhaps a couple of other meds to stave the pain. Her Lidocaine Infusions have been successful. So I'm really curious as to "why " Ginakins ♡ yours (thus far) made you worse???!!! I definitely have been told Anethesiologists are the Specialists that do these Lidocaine Infusions are very difficult to find. It's not an expensive treatment....and perhaps that's the only very sad reason? I can't figure it out. Another thing is, the Medical Caibidoil "oil" I take for this is a very High CBD ratio with a very Low to hardly any THC ( the stuff that makes you high or ephoric ) which is in no way for me. I'd like to be mentally functionable but everyone is different. I'ts very expensive and as it gets prescribed more and more these "Licenced Producers" I fear are going to get greedy and after I've lost everything and I'm unable to work. (Ydontujustdie?) If I had to scrub toilets to make an honest living - I'd be scrubbing toilets! - I can't let go of that ignorance that Ginakins ♡ we both thaught was just adding insult to injury!!! I'm going to catch up a little bit latter because too long at this I start feeling a bit overwelmed. Ginakins ♡ one of the most important things ( although it's a real challenge ) is to stay as far far far away from stressful "anything" is a must for me. The only thing that 'thing' was correct about is our nervous system does start from our Brain Stem and down our spinal cord nerves reaching far out to our Periphial Nervous System and is very complex. Mind over matter I believe can be successful in certain individuals for certain things but this is truely the most relentless pain that others con not even imagine. A Kabillion deep paper cuts but from the "inside - out" , poor gasoline into the kabillion paper cuts and throw a match inside of us! - hey Ginakins♡? Yah, it is tortureous.

    Hope I don't have a pile of typos

    GB

  • Hi Ginakins ♡

    Haven't talked to you in a wee bit - but always thinking of you ♡ . I have a family, well only siblings- no hubby or children..that won't do any research as well. It's really disheartening -isn't it? I had one sister say ; Nothing I can do but if your in such discomfort try to get the help you need, or maybe you can wake up in a new body!

    The only reply I could give was the truth with a wee bit of sarcasm. --- Guess that's just it; wake up in a new body. Unfortunately the word "discomfort" is not a word in Adhesive Arachnoiditis.

    Haven't heard back from her.

    Discomfort is having your wisdom teeth pulled for Crips Sake! 😂

    Have you had any surgeries Ginakins?

    You probably had less pain giving child birth Ginakins ♡. If so perhaps any females in your family might be able to relate if they can "remember" that pain. I don't believe pain can be recreated and therefore pain can't be "up in one's head:!

    BULLFEATHERS TO THAT!!!!

    I love communicating with you because we are in the same page.

    I really hope your hands have settled down a wee bit. For me flares seem not to come because I'm in a perpetual flare at all times.

    Ginakins it's the nastiest hell on earth and for anyone else to comprehend our pain quite frankly is impossible.

    Hope I can hear from you soon

  • Hi to everyone suffering from "real" Chronic Pain. The reason I typed "real" is simply because I'm so frigging sick and tired of "medication abusers, addicts, and Fuck Ups that will sell thier Pain Relief Medications and then with $$$ go buy.......oh whatever the Fuck they want!), which is called "Diverting".

    These selfish ass holes ruin it for all of us "True Pain Suffering Human Beings" !

    I'm on a rant at the moment because this is just "Nonsense" that "any Doctor" should be able to "figure out" someone/ patient does this sort of shit!

    Count my pills, test my pee, draw my blood for the rest of my life !!!! If that's what it takes, I'm up to volunteering!!!!all of this!

    There are l alot of these "Pukes" around and they just piss me off.

    Go get some help , "Abusers and Addicts" you're making others suffer- Shear Hell!

    Doctors are no longer prescribing even one tenth of what some of us may "truthfully " need!

    Go get help-

    It's out there -

    Everywhere-

    Save your shit life-

    And "rejoice" in bathing in a "Clean and Sober" life.

    Therefore: Staying out of the lives of so many many others that suffer torturous lives!

    Ginakins♡

    Post if you can?

    If I've insulted anyone with my language, just take it for what it is; colorful language because I'm so sick and tired of it all and, yes I'm angry, you better believe I'm angry!

    POLITICIANS TOO !!!!

    STAY OUT OF OUR DOCTORS OFFICES AND GO DO SOME THING THAT IS OF REAL "PUBLIC SERVICE!"

  • Love that post! I've been saying the same exact thing for months. It's ALL TRUE. Drug abusers have RUINED it for all of us suffering and in TRUE dibilitating pain. That's the problem with drs.... the abusers have ruined it for us. I feel stereotyped every time I go to a new dr. It SUCKS!!! As far as "discomfort", BS ON THAT. Agreed-everyone doesn't get it. I got angry with my mom yesterday on the phone cuz she was making the dumbest comments and I lost it. She won't read up on it and quite frankly, i made a decision last week when my daughter hung up on me cuz "she didn't want to hear about my pain", that I was ALL DONE with family, friends and ESP my immediate family ( mom, brother my kids) cuz I don't have an ounce of room for anyone close to me that won't look it up, TRY to get it, etc IN MY LIFE ANYMORE. Told my mom just that. Didn't phase her. After my daughter said that, that was it for me. Am I hurt? Of course. But to have her be so selfish and stated basically that she doesn't care, I'm all done with her and anyone close to me who won't even LOOK IT UP but can surf the net for stupid things. I have enough stress without them. Priorities. It time I come first instead of always being the one to be there for everyone. Who the fuck is there for me? My wonderful boyfriend, my father and my aunt. And of course you. My mom best friend texts me everyday sometimes just to say ""I'm thinking of you to I love you". My mom never does that. So I only talk with a couple people. My best friend here has turned her back. Fuck them all. I'm a bit angry this am. Sorry. My hands are worse, if that's possible. My dr FINALLY started me on a pain patch. No relief yet. Takes 3-4 days. We'll see. Appt with med marijuana Friday and next Friday which is when I'll get my card. What can you tell me about the different forms you can get. How well do the oils work for you? How many times a day? I don't want the thc part. I hate that feeling. How are you?

  • I'm so glad to hear from you Ginakins ♡! !

    When you get approved (I don't know how it's done in the States, but in Ontario Canada we get Educational appointments with a R.N. or P.A. who know all the answers to your questions. My main concern was I don't want to be "stoned"!!! I was prescribed a "synthesised" version of Canibis the Pharmasist called "Nabalone", and Holy Shit , I couldn't make a cup of coffee! Sent it gladly back to the Pharmasist. It was awful. So I take canibidiol with a very high CBD (you don't get "high" or "stoned",children use this as medicine for a variety of conditions. The canibidiol oil I take is <.05 THC and >12.5 CBD. There are many combinations so that's why it's very important to talk (I had to have 3 appointments! ) to an Educational Nurse because that synthesised Nabalone scared the shit right out of me and it "screwed up state of mind".

    I guess what I'm stongly suggesting Ginakins is you don't want to have a bad experience. Didn't see you post in a bit so I was just thinking and hopeing you were just taking a couple days away from it all. I know when I need to do that and I do. Other wise I'm to overly stressed and that reeks havoc on the CNS -Center Nervous System.

    It's shear hell.

  • I'm very glad to know you were able to read my post back to you. I was really concerned not seeing any posts from you. Maybe I'm this Pain Group we should just post quick post saying : checking out for a couple of days, exhausted, going somewhere wother family, in hospital, not in hospital, sick of everything and everyone in using me moaning and groaning, or for whatever. We have the right to our Privacy, definitely. So it would be a choice of course. But I think alot of people I'm this pain group seem to connect and some not so. So if anyone thinks this is a food idea to give others who care the heads up because I think we'd all be surprised just how much people care here. I've certainly noticed this.

    Sooooo, I'mchecking our for at least a few days because I have at the present time have a bucket of Chaos going on which non of it I own but feel I can only do one thing at a time. I'llprobably end up reading a few or more than few posts though 😂😂Oh, shit, hey?

    See, I still want to know certainly that everyone is relatively O.K.

  • Last Post was for Ginakins ♡ and of course everyone else too.

    Breath, relax,

    Big breath in through my nose, out through my mouth!

    I'm so very sleep deprived,..it Bites the Big One!

  • Yes it is. Today I go to medical marijuana dr for first time. In extraordinary pain. Hope your enjoying you time away.

    Ginakins

  • Hi Ginakins♡

    Just want to ask if you are going to be receiving "Educational Sessions with a R.N?

    I found them to be very valuable. There are so many different strains and you need what is "right" for you. Medical Canibis/Canibidoil is highly individual. Remember the Golden Rule:

    Go Low and

    Go Slow.

    Titrate up slowly.

    I know the anxiety of wanting relief from Intactable Pain that never ceases!

    You want relief NOW not TOMORROW!

    Go easy Ginakins ♡ Rushing it won't be benificial until you can gauge your level of tolerance and you may have to change the CBD/THC Ratio.

    I can't do the THC, only at <.05. I think I mentioned I was prescribed a synthetic "junk pill" - "Nabilone" and oh, God, it was a terrible experience. I couldn't make a cup of coffee with that! I told the Physician- The Pharmacy can keep that

    "NA balogne!"

    Your so exhausted from it all. You want a miracle.

    But easy does it. You do not want to have a bad experience. Let me/us know how you ate coming along with it. It may take a few weeks to a couple of months to titrate up to your prescription dose.

    Good Luck Ginakins ♡

    Post me back, if you can?

  • Hellohellohello

    How are you? Waiting for my card to come. Just wanted to see how your doing. I'm awful. The pain is to intense to handle. Gotta tell you a few things but don't want to on here. Did you take time off? I really hope your doing....well, the best you can. I HATE this illness. If this doesn't work, I'm screwed. ❤

  • Ginakins!♡

    I'm glad to hear from you 😀.

    So you're just waiting for your card? That's great news! 😀Are you on Facebook?

    If so we should be able to have a Private message????

    Let me know and remember anything posted here is, I believe GLOBAL.

    So you Must be careful your personal information is speed all over the place.

    Hopefully I'll be able to find you on Facebook *GINAKINS*♡

  • No that's not it. Ummm....gotta think about it. Having a really bad night. Pain is beyond imaginable. That's all I can type. My fb name isn't ginakins. I'll check here tomorrow if my hands calm the hell down. Crying it's that bad

  • Hi. Got card and dispensary today. Got.vapor and tincture. Overdid it. No pain relief. Tired. Don't like the ratio. Gonna give it a full day tomorrow and see damn ass expensive! Do you know if it's gonna work right away? Zero pain relief and it's bad!!! Are you ok? Wrote on here to you last night and it's unusual for you not to reply. What's up?

  • I've never had any needles in my spine. Unless you count an epidural 32years ago when I had my son.

    As far as the dr posting anything, he didn't. I was referring to myself. Meaning....I just posted the post about having the lidocaine infusion.

    The dr finally called back last night after calling every 30 min for 6 hours! He told us "live with the pain" and " I'm not doing anything for you". I am a complete wreck. Going to my primary at 3:15 today. Idk what he can do, but if it's hospital to get relief, I'm going. Also reported the dr to 2 different health boards here. I can't stop crying and the pain is undealable.

  • Just me again. Havery you been tested for Diabetes, I know there can be nerve distruction but haven't heard of it going into ones hands. I still can't figure out that little over 48 hrs. that I smothered my hands with cortisone anti itch Vaseline stuff. You were having the same thing happen😭.

    Have the best day that is at all possible Ginakins, I'm just going to make myself my first cup of tea - preferring that to a cup of coffee this early morning. Hope you are able to get back to me.

    ♡♡♡♡♡

  • By the way...yes, have been tested several times for diabetes. I don't have it.

  • You sound exactly like I was. I'm making improvements with the help of a functional doctor. Pain medication won't heal you but vitamins and minerals can heal the nerves. I had swelling in one hand and couldn't even cut my dinner. Now I can do this and my hair etc. I can't text repetitively yet but I couldn't do any at all before. I had to use voice. I'm only improving on his programme. If you want more information private email me. In terms of pain relief, I use safer pain management options like, magnesium chloride spray and arnica cream. Hang in there!

  • Hi health3030. Interested in what vitamins and minerals you are taking. I'd like more info. I take a bunch of vitamins now, but am interested in what works for you.

    Thank you

  • Hi there. I'm on a Thorne b complex and b12 injections. B12 is known for healing nerves. L carnitine, ionic minerals. Minerals have to be in balance. So do b vitamins. Taking one high dose mineral can knock off the balance of another. He's treating me like an undermethylator. I take calcium, high dose magnesium, selenium and boron. Zinc is balanced with copper. Omega 3 algae oil. Digestive enzymes and hcl. I have low stomach acid. I do recommend a functional Dr when deciding on treatment/dosage. For example some people may be too high in calcium and should not take this. It's dangerous unless you need it.

  • Did you get this message Ginakins ? Have you tried any of it? High dose magnesium is good for pain. The man that runs the pernicious anemia charity used b12 iv to heal his nerve damage.

  • Hi Gina,

    My name is Troy and I have been in and out of doctors offices like no other it seems these days these doctors don't want to prescribe narcotics because of this opiate epidemic phase that were in if it were me and I were in your shoes I don't think cortisone injection shots or Ladicane injection shots add the proper way 2go I feel it's unnecessary and my wife was going to the same type of injections it's like putting a Band-Aid over a sore it works for a short period of time because doctors don't know how to fix it so they just cover it up with a shot and a few pain pills if necessary.

    I would recommend that you go back and see your GP and have a nice little chat with him or her and tell him or her exactly how you're feeling about these shots that are about to come up and that you've searched the internet and read Lots reviews on people that have had the shots and the shots are only short-term goals if you understand what I mean depending on what area you live in if you wish to share that with me I could try to help you find a good doctor weather it be pain medicine or Suboxone at least you wouldn't have the coming down effect from opiates if your taking them now and Suboxone does provide or is effective up to about 4 strips so you can find a Suboxone doctor to take your insurance that's where you want to head. Or you can leave me a message direct me to my email at 1fsster1 at gmail.com

    NPS I know exactly what you're going through I've been through way too much already and it's been hard for me as well you bring the sadness sometimes to me and then my sadness turns to anger because I can't find anyone to help so I'm reaching out to you to let you know I have some answers but you have to leave a message for me here or if it published my email you can send it there would be more private. Thank you and good luck well you don't need any good luck u already have it with you!!!😊

    Troy Goodrich

  • Hermes123. Had two operations back in November to try and stop my painful right hand from curling inwards, but I am afraid the operations caused more problems than they have solved, I am left with a numb freezing painful hand as if there is no circulation, its made my hand clumsy, I have to see the surgeon for a follow up next month. After this operation I was suppose to have the left hand done? but that will not be happening now, I don't want to be left with two useless hands, I am so exhausted by everything my brain cannot think straight any longer.

  • I have been in 4 de DX see D SW the same situation. Sometimes nothing works. I use heat, ice, pain cream, pain meds, etc. There are days and nights I can't wait for them to be over because I am suffering so bad. Many times it actually last for 3 days or longer. My back, hips, feet, hands, thighs, back, etc.

    It's a no win situation. My doctor said there are days that nothing seems to help. I go to a fibro specialist. Too many doctors still don't believe in Fibro; call it what your want but the pain is real to those who suffer. Wish you all the best.

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