Chronic Pain patient

[Danabaci]

I've been a chronic pain patient for 4+ yrs. I'm

Simply trying to manage my daily, traumatizing pain like many of you all.

[deejames]

Hi Dana. Welcome to the forum. You are right . Chronic pain is traumatising. I was thinking myself that when my pain gets out of hand I get extremely stressed. The accumulation of that stress over years has made me mentally unstable at times.

Perhaps you could talk about your pain a little. It's source and how you manage it at the moment.

Dee

[Rusty8 in reply to deejames]

Hi silly question but do you ever get any relief from this I wake up one day and think it is easier today and next day back to normal family must think I am cracking up I know try not to say anything and then that seems wrong that you are keeping it to yourself my only comfort is sat or laid on bed then feel guilty about that oh dear i don't know what to do for best it's up and down like jack in the box and being asked which I believe to be right to cut down on steroids and that is worrying me can't cope at moment sorry to rant at you but hope you understand thank you

[Trulysad-76 in reply to Rusty8]

Bless you Rusty8. I am also a chronic pain sufferer and I understand you completely. I am the same, I try my hardest not to say anything because my family are bored of hearing hearing it. I've had tests done and MRI shows bulging disc and I have M:E and Raynaud's disease but nerve conduction tests came back normal so hey I must be faking my pain and constant vertigo. I must enjoy getting stuck on the stairs and my hands burning from the inside out. I too feel guilty for laying on my bed and I feel like a complete fraud.

I know this is not all in my head!

[debsreed in reply to Trulysad-76]

Look up CRPS

[Trulysad-76 in reply to debsreed]

That was interesting reading, thank you debsreed

[Danabaci in reply to deejames]

Hi Dee. I'm 41 yrs. old and have been a chronic pain patient for 4+ yrs. after a whiplash-like injury practicing for my black belt in self-defense. Now I suffer daily with neck, head and facial pain due to permenant nerve damage to my neck. I also suffer undiagnosed abdominal pain. I used to enjoy the life of a busy professional and amateur athlete. Now, I am disabled, sold my home, resigned from my job and live with my incredibly supportive parents and loyal black Lab. I get out about twice a week, always before 2pm as my pain flares in the afternoon. I see 2 neurologists and have just gotten word that my pain management doc has nothing more to offer me. I have been struggling to find a pain management doc to take me on as I've tried almost everything. I'm scheduled to see a new doc tomorrow that has accepted me into his medical marijuana program for chronic pain so we'll see how that goes. I'm exhausted from keeping up my resolve but my pure, survival instincts to get through the traumatizing, daily pain prevents me from falling into depression. My biggest challenge that I am still having difficulty coming to terms with is the tremendous grief associated with chronic pain conditions. So, that's my story. I hope you're enjoying a day of little pain and many comforts. Btw, I live in NY. Take care, Dana

[Danabaci in reply to deejames]

Did you get my long reply Dee? I'm new to site and still figuring out how to use it

[deejames in reply to Danabaci]

Yes Dana. Obviously the system works differently here in the UK ( at the moment !) . Medical marjuana isn't legal for pain only for MS. CBD oil is legal and I use I daily. It's oil from plants that have been modified to contain very tiny amounts of THC so that there is not 'high' . My pain is from a different source but when it comes down to it the emotional effects are the same. It's been suggested that because I am old then it's easier to accept as this kind of life limitation would have come anyway. B......locks. My life has been robed.

Having said that I know that acceptance is best for achieving a less traumatic and rocky state of mind. I meditate but when it's particularly bad the whole system falls apart. I would recommend it wholeheartedly. If you had the discipline to do a martial art then you can put in the effort to teach Yourself mindfulness. Lots of free apps on line. Make it your mission for the next few weeks to find out about Mindfulness Meditation. Learning something new gives a since of purpose that can be lacking when doctors tell you that they can do nothing more and life seems narrowing and confined.

Listen I will message more if you want. Just keep responding if you want me to. There are lots of people who have been at this pain managing business for years on the site. Nobody can pretend it's OK but there are stratagies to help and support for the dark twisty moments.

Dee

[Danabaci in reply to deejames]

Dee, it's Dana. How have you been? Did you try the new pain med. yet? I've heard of it but have no experience with it. I'm the same. Received my script for the medical marijuana and waiting to get my official ID so I can begin experimenting withtry later this week. Spoke with my wonderfully empathetic local neurologist (I have 2) this week and voiced my desperation and Weakening resolve against the daily pain. She is personally reaching out to pain management docs and finding one that will take on my case. I have personally reached out to many pleading my case but have been either immediately turned away or after an initial visit I am told they can't help me. My neurologist has always handled my pain meds and has increased my oxycodone but it's simply not effective anymore. I need more effective, long-lasting pain medication. She knows this but needs the outside recommendations of pain medicine specialists as her certified specialty is epilepsy. I can respect that, fair enough! I just hope either the marijuana works well or she finds me a new pain management doc ASAP. I have tried to remain busy When I have occasion breaks in pain to maintain my sanity. the warmer, sunnier days are coming and it's going to be tough laying indoors as often as I do. But I'm a chronic pain warrior, like you, so I hold on for better days. I hope this finds you having a low pain day and a hopeful spirit. Write back when you can. Your friend, Dana

[Danabaci in reply to Danabaci]

Also, I forgot to ask you. You mentioned previously that you use CBD oil or pain relief. There are so many available oil strains at the dispensary but one strain I'm exploring is a high CBD oil to take as a daily, pain-preventative therapy. Do you find it helps your pain? I'm so curious! Does it make you sleepy? i would appreciate any advice you could offer me. Thanks!! -Dana

[donna19]

Hi everyone. I was on a while after an accident at work suffering whiplash and being in constant neck back arm pain . I had a digital xray done in tampa America found out i have damaged ligaments in my neck my spine is un alined so my head keeps moving and my c1 moves over my c2 . Went to london paid for another upright scan it backed up the first but getting a orthopedic or a neurosurgeon to say i need surgical intervention is hard no one wants to help . I have signs and symptoms of cervical spondylitis and been told aswell i have a chronic pain syndrome. I too spend alot of time on my bed lying down as its the only way to takd pressure of my neck and back . I feel like i am going crazy trying to get sorted . Its ok having drugs from pain clinics if they help i know if i went America today i could get sorted as they know all about this problem cranio cervical syndrome. Because drs have not heard of it here in uk and trained on it or the equipment thats it im on my own fighting everyday challenges with little energy or hope to get through another day so i know how you all feel xx

[Danabaci in reply to donna19]

Hi Donna19. I'm Dana from NY. Sorry, I haven't checked my posts in a few days. Whiplash-type injuries are so misunderstood, even here in Ameeica. Docs doubt the amount of chronic pain that can result from the physical trauma. I have been a chronic pain patient for 4+ yrs. and although I live in the US, I have struggled desperately to find effective pain relief. I have traveled to Maryland, regularly to Conneticut and around the Northeast looking for a pain management doc that will take on my case. I'm a rough case since I've now tried so many unsuccessful treatments including surgeries, dozens of pain-preventative meds., countless invasive procedures and alternative therapies. But the searing pain remains, every single day!. I empathize with you!! Please don't think simply because I'm in Amzrica that I have access to great physicians that are eager to treat me. I take oxycodone for pain now but it isn't effective anymore so I just received my medical marijuana license to see if that addresses my pain. I haven't tried it yet. Please hang in there. I too spend so much time in bed or I'm couch-ridden and it's so frustrating, I understand! I leave the house a couple times a week with my mom's help. If you can, try to set tiny goals for yourself, each day, like, "today I will take a shower & wash my hair" or I'll empty the dishwasher today. Little, perhaps doable things. And if they don't get done, you already have a goal for the next day. I have cultivated a little veggie garden in my backyard and it's taken me a while...about 30 min. , 2-3x a week for weeks to finally get it running. If you can find tiny windows of time when the pain backs off, you can slowly put something together that is healthy for your mind and distracts from the pain. Please feel free to reach out when you need to and I'll try to check back more frequently. How long have you been suffering and are you under a regular doctor's care? You're a chronic pain warrior like many of us. We'll proverbially hold your hand through this! Peace, Dana

[donna19 in reply to Danabaci]

Hi hunny it was great to hear from you . I do hope you are having a good day today . I dont think that anout you being able to get care at all i know that unless you are seriously well off there and can pay u can get things done there . I have a friend in largo florida she had a whiplash injury she had to have brain surgery as her brain had shifted but that was all through her lawyer . Ive met a dmx specialist in tampa and been in touch with regenerex a stem cell place in colorado. If i have thousands and can keep travelling from the uk il be ok . Just getting up today from sleeping funny has twisted my neck muscles and uncomfortable the day . Im glad you have managed to focus on something that gives you joy . My pain clinic sent me to physio as they didnt know what to do she didnt want to touch me then i saw another specialist and they said i have cps. So now im being referred back to pain clinic . The thing is in the uk they have not been trained in these aspects and not the equipment here that the usa have . So many different drs tell you different things then that confuses you even more and does not help you . Keep up with your project time look forward to hearing from you again . Take care donna x

[Danabaci in reply to donna19]

Hi again Donna. I too have gotten the run around and go between doctors that seem to shuffle me around. It's been happening for years. And I understand you about hearing different things from different docs. In the past 4+ yrs., I've been told I suffer from several different diagnoses. No one seems to agree! Do you mean ketamine therapy when you say DMX by chance? I have tried ketamine infusions if that is indeed what you're talking about. I'm curious about the stem cell treatment! The fact that you can travel between the US and the U.K. Is wonderful but what a nuisance. And what do we do Between appointments and treatments? Wait. And then wait some more, all while suffering awful pain. That's one of my biggest frustrations! I'm struggling terribly today and my pain meds aren't helping much. I've been bed-bound all day. I heard rain is coming and that seems to worsen my pain. I'm exhausted both mentally and physically and desperately trying to stay positive. I don't think I'll meet my mini goal for today but there's always tomorrow. Keep your chin up and I'll try too. All the best, Dana😊

[donna19]

Hi hunny sorry you are suffering yes badcweather does spur pain on i do not think i will ever understand that . Dmx is digital motion xray its nubest dmx tampa have a look on the internet . They found out within minutes what was wrong up till then i felt like it was all in my head as drs make you think that . They also can refer you to who can help . It cost me $750 for that . Well worth the money . We do holiday alot in florida we usually spend around 6 to 8 weeks every 18months . My hubby likes doing the parks but obviously i can not do all of it now its good if you are able to make friends with Starbucks lol x the stem cell treatment is injection in your ligaments . Some of mine are not even visible as they are ruptured thats why my head moves alot and i have to have my spine realined every couple of wks . Drs here say its not serious enough . But i could cum to usa and see a dr who i have been referred to and have my neck screwed and fused . Crazy i feel so sorry for people i wouldnt wish these feelings on anybody do u have alot of support hun i hope so . Just do what you can and rest when u need to . 41/2 yrs is along while i know and if there was nothing wrong we would be bored of playing games thats what i say to drs now . You just wouldnt keep going looking for help would you ? Well i hope the storm is not too bad . We were there last September when that storm hit real bad well hurricane. We had travelled to jacksonville st augustine cocoa beach and down clearwater then back up to disney .then the storm wrecked homes and lifes in the first few places we had been we were so lucky we had already been . We got married 5 yrs ago in kissimmee disney thats how much i love America xx anyway please take care talk soon xdonna

[Danabaci in reply to donna19]

Donna, I'm really interested in the DMX diagnostic test. Since you mentioned it yest., I've been scouring the Internet for as much information I can gather. It's not offered locally but there are a few providers just 3 or 4 hrs. away that do it. I'm too sick to travel by plane but we can certainly make the drive. I just hope it's covered by my insurance. But. Did you say it only cost $750 though? That's totally doable!! It's a viable option for me and I'm planning to make calls tomorrow to potential providers. My dad is a retired doc and is also seeing what connections he may have to help us with this as he was an interventional radiologist for almost 40 yrs. See what you can learn from talking with fellow chronic pain warriors! I thank you dearly for even the potential of another perspective and life line. One question Though. We're you worried at all about the high levels of radiation given off by the DMX machine? I think I'm willing to take the risk. When are you planning to receive the stem cell treatments? I'm hopeful for you that those will help. You're opting for that treatment before cervical fusion surgery first, right? Do you have headaches or other symptoms along with your severe neck pain??? I do. The whiplash injury also left me with referred jaw and facial pain and ear pain. My ears sometimes feel so congested and clogged that it causes incredible pain. Strange but true and I know I'm not crazy. I trust myself explicitly. Have you undergone any typical treatments in the UK yet or have docs discounted your pain completely? I hope this finds you comfortable today. It's supposed to rain here for the next 3 days so I'm miserable. Anything positive happening in your world this week? I just have Doctor appointments. Your friend, Dana

[donna19 in reply to Danabaci]

Hi hunny hope you are ok i wasnt that worried about the dmx and radiation i was more concernedthat they would not see anything and i would feel more stupid than before i will send you the address and phone number in another mail he is so so good he has contacts everywhere he put me intouchvwith hhe chiropracta in london i see . Yes i get haw achr ear ache my eye waters any headaches like anything sometimes on the dmx i found out my jaw comes out of socket when i open anc shut my mouth through the damangd ligaments not holding it . I kept thinking i had an absess on my gum becaysevof the pain in my face it was down to nerves . I am being referred back to another pain clinic for the cps i did get told because how i am its very unlikey with time frame it will not go away its permanent. I nean who wants to feel like this hey . Have you been see a neurological dr ? I am going to a private clinic next week as my chiropracta got in touch with them about prolotherapy to strengthen my ligaments . He has been brilliant to me he had a bike accident wen he was young and was injured samr as me in similar ways he researched things travelled and treated his self he is canadian he is gorgous i tell you lol . This is how the dr in tampa from dmx knows him they do seminars all over together . I have learned loads about the way things are and why but it does not take it away i feel for you hunny maybe you could call dr john posselthwaite in tampa he is really well connected to alot of specialists . Like i say i will send you what i can his site actually shows you images that are taken its quite freaky really . Will mail u in a little while please keep as happy as you can thinking of you xx your friend donna xx

[donna19 in reply to Danabaci]

Hi hunny as promised his name is dr john posselthwaite his wifes name is linda thry are lovely people . Nubest whiplash injury centre 4159 corporate court palm harbour florida 34683 phone number 7277360000 tell them that donna durham who seen them in September from the uk told u about yhem they maybe able to give u help for contact in your area . He also knows dr joel frank who deals with whiplash injury he is a neurosurgeon look him up on the internet he done my friends surgery in march . Good luck thinking of you xx

[Danabaci]

Donna, thank you so much for the invaluable info! Since Tampa and NY are so far from one Another and I can not travel by plane right now, I may contact your doc to explore any possible options closer to me. Is Dr Joel Frank your chieopracror then? I don't have a chieopracror as my neurologists made me promise early on that I Wouldnt see one for manipulation or any care whatsoever. I'm excited to explore this further. I'm glad the DMX gave you some long-awaited results. Maybe it can do the same for me. I'm making calls tomorrow. I have a doc appointment tomorrow and one on Thurs that I'm dreading. I hate when I need to feel well enough, at a particular time of day to go out and be functional. The pressure bothers me. Chronic pain conditions have so much uncertainty attaches with them. And I hate cancelling doc visits too. I makes it worse. Ok. Well. Sleep right and I hope you awake refreshes and feeling good. -Dana xoxo