This is the 2nd one I'm going to. If any of you know me, you know I'm in severe chronic pain from neuropathy in my hands. I can't take it anymore. Nothing is working. Any suggestions at all for the first time I go see her on Tuesday. I WANT answers. I want someone to work with me. I need pain relief also NOW. Please help me to get this one shot at what should and shouldn't be said. I'm a very aggressive person esp now. But I'm also angry, cry all the time, person too. I'm at the end. I can't and won't live in this pain.
Thanks all....Gina
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Ginakins
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Gina-----I have some idea how you feel. I have neuropathy almost every where. It has taken me five years to get on a schedule with finding a good doctor and treatment plan to at least feel less pain. I have a spinal cord injury, pudental neuralgia, neurogenic bowel and bladder, along with others things. I I know you feel terrible. However I would suggest that you try and put your anger and being aggressive away. You will just put her on the defensive. Try and approach the situation with some calmness. You can still let her know the pain and frustration you are having. There is nothing wrong with tears that come with pain. Don't go looking for a cure Gin, just hope for some relief!! Will be praying for you!! Hugs and blessings!!
I have peripheral neuropathy in my hands and Restless Leg Syndrome.
My main painkiller is MST slow relief Morphine 40mg twice daily, then tramadol and co codymol up to four times daily each. I also have oramorph for breakthrough pain. In addition I have two 5mg tablets of Diazipam daily. I have been on more than this but it makes me a zombie.
Recently I have been cutting back by the use of lots of magnesium oil on muscles, joints and hands, it really does work! Plus started using CBD oil twice daily under the tongue as tincture available on the net. I get a particularly good organic strain. If all else fails I have access to cannabis too.
Hope this helps, just my way of coping but still being able to slightly function. I can no longer work, avoid lifting things and limit my time I spend typing.
I've had severe neuropathic pain in my hands for five years following surgery for cervical stenosis.
I'm afraid nothing works in terms of treatment and medication and anger certainly doesn't help. The condition is incurable so one just has to find diversion activities to take one's mind off the pain. There is a drug called sativex which is a mouth spray based on canabis which could help but I live in France and am unable to get it here.
Sorry you are suffering so much. I know exactly how it is.
May I suggest that you say just what you have said in your post.
Sorry I can't help any more than this I have never been to pain management.
My thoughts and prayers are with you Gina, God Bless. xx
Hi Gina
We've spoken about this for a long time now. My entire waist down is burning like my entire body is in a French Fryer. It's horrendous and I can't bare much more either. I still feel it's nerves coming from your back. I'm not the Doctor here but Neropathy always is nerve related. The only thing that I suggest that has already been suggested is don't go in a Doctors Office and be aggressive. She won't take too kindly to that nor will any Doctor. Stay calm. Pte-write (or have someone else (your nurse) write for you - when it started - go way back to the beginning - in your feet ,I believe and take it from there. Take someone with you to make sure you understand what's being said and clarity any questions she may have. Tell her that there have been NO Images taken. She needs images Gina. Yes - an MRI preferably with a easily pee'd out contrast dye - Gadolinium, it's used in most MRI'S to see soft tissue (such as nerves) that can be entrapped. A CT scan does not show this with the same detail. I'm going into see a Specialist on Thursday - finally. He recognizes Adhesive Arachnoiditis. Many many do not whether by ignorance or choice. Lidocaine Infusion didn't work for you but you may want to research Ketimine and discuss this. But for a very long time now, no one's been able to find the "root" of the Neropathy. "Nerve Root(s)" somewhere? Entrapment or damaged?
Other posters have made some excellent t points but I would emphasis trying to get your anger under control. I k ow you are angry with the situation but anger creates tension which does add to pain.
Pain management can't cure or take away the pain.it can help to reduce it but sadly there are no pain killers avaliable. There are however ways to help with managing the pain which include those that you undertake yourself like meditation, pacing of activities and distraction.
I don't have less neuropathic pain than inflammatory but pain is pain no matter the source. I use oxycodone as a base with paracetamol, nortriptoline and take cbd oil twice daily like Patrick. I also have a medi pen that I use infrequently. It helps.
I hope you get some answers. Do continue to post here as contact with other sufferers makes a big difference sometimes. It's helped me a lot.
yes dee I'm 100% in agreeing with you,I'm only just coming to terms with pn,and it's 5 years ago I was diagnosed,but it causes me low mood swings and cause of it I now live on my own,I find it easier to deal with as I can control my own circumstances and don't think bad of me as I had a long term partner but I had no choice as there issues were affecting my health,so tough decisions had to be made,and even though I still suffer on a daily basis I've had to avoid situations that would enhance the pains,its tough and not nice to go through to doing certain things,but hey it's your health that comes first,good honest advice is a must.thanks
Deep, if you don't mind me asking - do you use your epipen for pain medication? There are some muscular injectables. I haven't been prescribed any such but know that there are pain medications out there which ate used in this manner.
Has anyone heard of or use Ketimine. It's an anesthesia I believe and some Pain Management Physicians are doing "Infusions" with Ketimine. My belief is a "Protocal of 'Safety First' followed by a four hour Infusion" It has lasted in Patients, from the information given me by those who have had the Infusions that it lasts for 4-6 weeks. Everyone is different. It is definitely a "Good to Know" that before Lidocaine Infusions or Ketimine Infusions there is always "Safety First". The relief of not worrying about adverse effects is somewhat reassuring for me.
now I've heard that in the past ketimine was used as by vets to tranquilize to horses,now obviously I'm pretty Sure you wouldn't get a dose that big,lol,yes and sometimes its used by trained doctors to administer to seriously injured patients involved in car crashes,if they require their breathing to be taken over manually,and yes I believe it causes nightmares/ hallucination's for a short period,so I would imagine that this is very strong and I don't know if it's even available for general use,I suppose it's equivalent to a class A drug type brackets sedative,so time for me to head back to the stable and get a couple of carrots,good night all.
Anethesioligists will usually be the only ones to administer an "Infusion". It is calculated by a persons body weight so there is a formula that's followed as a "Safety First" measure. Just wantingto know if anyone in this pain forum has had it as an "Infusion". There are different types of administration but for the longest effect I believe it's via Infusion.
I had ketamine after spinal surgery last year when I was hysterical with pain. Knocked me out for several hours. Sledge hammer stuff. I wouldn't want it in my daily life though.
Hi hello hello. It's a Medi pen not an epipen I use. It's really a vape but with cannibinoil instead of nicotine. 100% legal as is the oil I take under my tongue. I am sure it helps but my pain is wild fluctuating and it's hard to say what is working when I am throwing so much at it.
I have been in a very bad mental state recently so I am revisiting the Mindfulness concept. I meditated a lot before but have let it slip. I got Vidyamala Burch's book yesterday and am working on putting the idea of not resisting or fighting the pain but accepting it into practice. It's helping a lot to stop me going into the catastrophe mode where every spasm is a sign that things are getting worse. I am already dealing with some pains much better.
The pain is running not to mention ruining my life so it's time to have a different relationship with it. Brave words but things about death 24/7 calls for action !
Oh you betcha Dejames. I can't read "books" so to speak only because it is too painful. I need am Easle or something to rest any book on and I've herniated discs in my neck that are - a pain in the neck !!!
Hope it works for you and you give it time. Distraction is sometimes easier said than done☺
Hello. I have had multiple abdominal operations, and I am left with chronic pain. My pain consultant does ketamine infusions. He gives an intravenous injection of Ketamine, Ondansatron (for sickness) and something else - i've forgotton!, followed by a six hour Ketamine infusion. it is not intended to treat the pain, but to temporarily switch off then re-set the pain receptors. i have had this procedure 3 times, and after each occasion he has reduced my doses of my pain medications. i have had mixed responses. The problem i have is getting the procedure repeated when i need it. i have an appointment to see him in April, then i will have to wait, usually around 8 weeks for the ketamine. In the meantime i am in severe pain, and neither my GP or pain consultant will help.
Swap your aggression with assertiveness. Doctors obviously need people with ailments, otherwise they'd be out of a job, which makes us in charge. Ask her if she has a good idea of what this feels like for you and if so, what would she expect if she had it. I've even asked what they'd suggest if they were treating a member of the royal family with the same condition.
I wish you success and immediate pain relief, which is probably all you'd wish for yourself.
i read your post and would just like to wish you good luck when you go to this pain clinic and that you get some relief from this terrible pain that your being left to endure. as others have said try not to be aggressive. i wouldnt even say " i cant and wont live with this pain" as they may think that your threatening suicide and be scared to give you something strong enough to relieve your pain. I would say " i cant live any sort of life with this pain" i totally understand why you feel aggressive and angry, an animal wouldnt be left to suffer like this and no human being should be either. not that its much help to your pain but my heart goes out to you, and to all others in terrible pain. i have had my fair share of it myself. god bless you. please let us know how you get on. sending you love and hugs. love grace xoxo ❤️
Grace. Thank you. I'm scared. I'm worried. Nervous. All sorts of emotions. I need help and I need her to hear me and really listen. I've got one shot to make it good. I'm suffering to much. Agree with what you said. No animal suffers like we do. We SHOULDNT have to either. I'll keep you posted
hi Ginakins,think I've chatted before with you,every one who suffers with neuropathy is always on the look out for some sort of pain relief,but,and I say but in a big way I've not come across many folk who've had any luck in being pain free,so ultimately its a question if what's going to work best for you,I feel that I'm at the end of the road if being pain free,nerve damage is so difficult to treat and acceptance of this condition and understanding it can help a little,so best case scenario is to try and reduce your pain and make it bearable,I've suffered with PN for over 5 years and I dread the evening and bedtimes' as that's when it really kicks in,I can't wait to put the lidocane patches on each leg,this contains a local anesthetic and stays on for 12 hours,and I take 300mg of pregabilin twice a day,and 30mg tablet of mirtrazapine at night time,there's quite a few medications available and you might have to be on one for several weeks to see if it has any impact in your condition,yes the pains are intense and never stop relenting,I really feel for you,this condition makes you feel lonely,and mine has left me alone as who wants to listen to constant moaning,and cause people look at you saying you look alright,that just adds fuel to the fire,try not to get to worked up with this condition as mine feels like my legs have been set on fire if I get to stressed up,it's a horrible condition to have and I appreciate how painful this condition is,so gather as much information from this forum and you'll find your not alone here,best wishes
Stress plays a huge part with myself. I need the least stress possible to the point I have to sometimes just retreat into my bedroom because of the selfishness of another person sitting in "My" Living Room ! Three televisions and I need to go to my room? It's unbelievable that people expect their "own space" to be given them but are ignorant to "giving" space to the other.
as humans and with our heightened sense of pain,I've come to realize that only fellow sufferers understand this condition,yes your social bubble has been burst and without saying the "other" person,it feels like a naughty child been disciplined,or a dog been shouted at and left cowering in a corner,and that's all we are left with is a room,and the loss of caring rubs salt into a wound,and then you appear later and your lucky if you get "are you feeling better" and in the bubble in your head your saying if only you knew,yep a disappointing statement,and sometimes people can go through life pain free,ignorance is bliss eh,so keep yourself sane as others can drive you insane,chin up,plenty of people in here who truly understand,take care 😊
OMG!!! That must be absolutely horrendous,I can't imagine how painful and even discussing the subject can probably cause you embarrassment,but as adults on this site and people who really care are a very understanding bunch of folk,I suffered with ulcerative colltis when I was younger and more or less every procedure was conducted via the back passage,so yes not pleasant and I just can't imagine how you cope,if at all,but well done for letting others know how far PN can affect other parts of the human body,I wish you and any others who suffer with PN that's not been raised recently about how it affects their every day life a special thanks for being so honest and my heartfelt gratitude and tinged sadness knowing how much pain you might in,thankyou
thank you all. I'm nervous, scared, worried so many emotions about tomorrow. It has to go good. I'm not looking for a cure, just relief. Thank you for the prayers. I've got people across the US praying for me....RELIEF! Yes, I want to know the cause but give me some damn meds!!! Prayers are needed and appreciated. I only have a few family members that go through it everyday with me. It's been months. I've been very close to saying screw it. This pain has taken my life away from me. Every part of it. I'll keep you all posted. I love all the caring people here. God bless all. Fingers crossed tomorrow!
Gina
P.S. Keep the advice coming. I'm a sponge....I soak all info in. All that can help me. Also hearing other PN people and their meds, info etc
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