Can I get get some feed back on how many Of you go to a pain clinic and what's your opinion of that? My pain clinics have been awful. No matter what you've done or what you've been through, it seems they're always trying to cut you back or change something. I am in Washinton State. I go to a new doc now that does my pain mngmt and it's just made me realize even more how awful the plan clinic was. I feel truly blessed I'm where I am now. JudyLynn🌸
It all has to do the chronic epidemic of opioid addiction. They are all scared..yes pain management clinics are a nightmare. I am grateful for the physician I see. I treasure that relationship, I stay transparent with her, and that helps a whole lot for me and for her. I do whatever I can to show her I am accountable and not abusing her trust. She treats me conservatively, but when I am experiencing a flare , she is aggressive and very very helpful. I wish everyone could have that kind of relationship with their doctor. Anyway, I hope my response to you post will help others in re thinking what their relationship with their doctor can be...it does take a lot of trust and honesty. I wish it was different. I want pain management to be easier for us. Love and Blessings, Terri P.S. please know I am not judging recovering addicts in this post. We all have problems. I just wish it was easier for us to get the relief we need.
My pain clinic is great. I'm not on any opioids but I did have to sign an option contract in case I do end up on them. I get follow up phone calls from team members every 10 days or so. The team consists of a physician, a nurse, a pharmacist, a psychologist, & a fitness/exercise instructor. They also have a psychiatrist & nutritionist on tap if necessary.
Where are u painisnotmystory? I am in the uk and i have had my pain consultant for 10 years now, he is amazing! But he is german and has moulded his team with his ethics and attention to detail. He goes above and beyond with his abundant empathy and understanding. (The team consists of consultant anaethatist, pain physician, nurse specialising in pain management, psychologist & physio/osteo/acupuncturist)
I have never found another team like them! Someone is on the end of the phone and i can make appointments with anyone of them without needing referral. I think this is pretty rare tho, because all other clinics, in the NHS, treat me like an absolute leper because i am nothing more than a dirty addict due to my med load!
Its interesting the differences accross the world... yet somewhat sad how bad its got since the prescription med addiction boom! I think its fare to say physitions are scared to prescribe becuse of it.
I have had good and bad experiences with my pain clinic. The Dr who heads it up is fantastic .... When you get to see him! Some of the nurses believe that they know more about pain than you do. I wish they would invent a gadget that would let them experience our pain if only for an hour. Then they would know what it's like to deal with it! Unfortunately I'm dealing with being on a high load of opioids and desperately want them reduced however it has taken 8 months for them to even get me an appointment to start reducing them!
Saz... i am upthat creek without a paddle too... im an addict..not of my own choice, i had no idea it was happening to me.. now i would like to get off them... alas i am at a standstill because of physical side effects... but i am at 75% of my original med load... and my pain onion is peeled to the bone as my blown discs, fusion & arthritis/ stenosis pain is uncovered... where do i go now? Ive lost weight since reducing my pregabalin/lyrica which is a bonus but my pain is rearing its ugly as we speak lol x
Hi Lulabel, have you ever discussed with the pain clinic having a spinal cord stimulator? I have one, it's like a tens machine, except it is all inside your body. I have the wire that's attached to the battery runs up my spinal cord and pokes through to where the area of pain is and they can run up to 4 leads to the areas with pain. When I had that put in my opioids use came down, which was great. They then put Botox into my bile duct (that's where all my problems and pain come from) and the opioids went down again. It was soooooo good. It was like I was me again. I had pain, but not as bad as it is now.
So when the Botox started wearing off the opioids went up, I begged and pleaded for more Botox and they hummed and harhed over it (good old NHS) because of the possible side effects ... Then I fell pregnant. Now I'd been told that I couldn't have any more kids so I was in total shock. Through my pregnancy I tried to cold turkey off my meds ... I know stupid. Got to day 5 and thought that I was going to die. From there on in my opioids just went up and up because of the pain and where the baby was pressing on my bile duct!
I was so so upset with myself when my baby was born addicted to my pain meds. We spent 11 days in hospital before we could leave, he was also born early which didn't help matters but luckily he was only 3 weeks early! I had all the nurses telling me not to beat myself up over the fact he was born addicted and they were so careful not to talk about it in terms that the other mothers understood on the ward! I'm lucky, he's healthy, happy and developing at a rapid rate so my opioids haven't done him any damage.
Since then (a year ago and all through my pregnancy I pushed for having the Botox done as soon as I gave birth but no nothing!) the pain meds have gone up and up and now my GP isn't happy prescribing me at the level I'm at, the pain clinic have got an appointment for me to see the pharmastist next week along with a psychologist .. To discuss lowering my pain meds.. But they won't prescribe me anything else or work with me with a plan for reduction, they just expect me to start reducing them myself! Eeerrrrr NOT A CHANCE!! I want off them but DO NOT want the side effects of coming off them or the fact that they promised that they would discuss with me a fast acting pain killer to help with the break through pain ... Again they haven't .. Was taking oromorph but it just hurts my stomach and it makes my pain worse if I take too much of it!
So the amount of times I have just wanted to give up is unreal! I've had enough of it all! 12 years is a hell of a long time to be dealing with chronic pain. The only thing that stops me doing anything stupid is my kids. If it wasn't for them I'd have checked out a long time ago!
I would see if the spinal cord stimulator could be an option for you. I hope that things get better for you.. I know that feeling when the pain kicks in, mine has really kicked in now but I will be lucky if I get to bed in the next 2 hours! X
Great ideas terrive been already put up for a spinal chord stimulator on the NHS at Southampton hospital but there is a 18-24 month waiting list before a barage of psychiatric testing b4 they will let me have it... and i read on one NHS document that they will not give it to a patient with MS! (I was dx with MS back in 03!) My pain consultant has a bee in his britches over this... and says he is ready to challenge this and fight my corner as he suggested it in the first place... so yes i have it ...just out of reach for now...typical!
Im on way too much pregabalin/ lyrica... even tho im down to 1200mg a day... but i also am on 75mcg/hr fentanyl patches... down from 100s but that equates to at least 220mg of morphine a day... without adding in the pregabalin or any of the other meds i take.. and im at a standstill from all directions!
Where are u sweetheart?
My heart goes out to u for having to go thru so much with ur addiction and ur sons condition because of it... but its not ur fault... i often have wondered how the hell i had 4 children and didnt walk the same path! More luck than design.
I feel like we have travelled a very similar road over the past ten or more years... and so if u are anything like me, it can be really frustrating dealing with the NHS... my GP shat himself when doing my repeat prescription... and refused to prescribe me anything... cutting me off... no tapering of meds or asking pain clinic.. he just took em all away! I had to get my daughter to drive accross town to another pain patient i know... to borrow meds for the weekend... till i could see another GP willing to prescribe... i was a mess because of him... suicidal thoughts from the withdrawal of the pregabalin alone... my husband took me into pain clinic a dribbling mess and told him i was talking of suicide... or how i could have an accident to snap my spine to stop the pain... he took me into theatre for a cordal epidural to last until i was having cervical and lumbar denervation! It was a tragic time in my life... and it was only 6 weeks ago!
I have complete admiration for u hunni ...i know what u have been thru... and u r not alone xxx
Lulabel be sure to remember addict and dependency are very different. A diabetic depends on insulin. Some of us depend on medical pain relief. Your on the Max's list ::could the old methadone help you instead? Don't be afraid as it is the oldest drug for nerve pain. What ever works let it work.
Hello cprs... i apologise i am not sure i really know what to call it... i was merely trying to own my own dependancy rather than offend anyone reading... i am sorry!.thanQ for helping me to understand :)
I have heard that methadone is a possiblity... but i have never asked about it. ...im willing to try anything to help me to cope. At the moment i cant work, clean or cook...or leave the house except for hospital visits... i am 44 and i feel like my life has come to a stand still... and i am often reminded that i have nowhere to go with my meds.
My spine is degenerating really fast... ive had cervical and lumbar fusion... my neck looks crushed on mri... i can bearly eat soft food... as my oesophagus is being crushed as the stenosis and arthritis engulf the fusion... so they are talking of a pureed diet in the not so distant future! To top that off nicely ihave a disc blowing just below my lumbar fusion at the lumbar/sacro junction... its not herniated enuff for surgery yet... but i feel like i have a season ticket cos theatre nurses all know me by name! Lol... its sending tremendous sciatica pain thru my left hip and down my leg to my knee making standing and walking very difficult, impossible at times!
I was not aware that methadone was available on the NHS for pain patients... altho i have heard of one doctor in Bristol taking paitients in for two weeks to change them over to methadone... it seems a bit controversial tho from what i read. I dont know what to do really cprs... im a bit of a mess! Thats why i came here... to get some advice, and i end up giving some instead!
Hi Lulabel, I'm living in Sheffield ATM but all my specialists are in Leeds and Bradford! So it's a bit of a trek to the hospital to say the least!! I'm on fentanyl 125mcg changed every 2 days! Gabapentin 900mcg 4 X a day 1000mcg paracetamol a day and oromorph as and when required ... A 200ml bottle that is 5g in 10ml lasts me about 2 weeks .. However my problems started with the ramp up of pain meds because the oromorph doesn't work for me. It hurts my stomach and actually aggravates my condition!
I have a wonderful condition called SOD ! ... And it is that exactly! It stands for sphincter of oddi dysfunction. At the end of your bile duct and pancreatic duct is this wonderful sphincter that stops bacteria and other nasty stuff flowing back up the tubes and also releases bile and pancreatic enzymes into your small intestine. Mine either stays open so that the nasty stuff goes in or slams shut so I get jaundice & pancreatitis. Oh then mine also spasms so it is like having a knife driven into me and twisted. The pain can send me to the floor when it gets really bad!
Yes I went through all the crap of a pychologist visit before I got my spinal cord stimulator! I had to say that I knew what I was getting into, that it wasn't a cure but a help ... Yada yada yada!! Also had appointments with the pain nurses to show me where it would be placed what it looked like etc...
I tell you that operation was weird !! The actually woke me up when they had put the cord in and turned it on to see if I could feel it and how much coverage that it gave me! I only had one lead put in but it was a really strange experience and the battery for it sits just above your bum, mine I can actually move ... Don't think you are ment to be able to move it but I can!!
I have heard of them changing people onto Methadone as well ... I wouldn't care if I could just get off most of this crap!! I'm like you, I find it hard to do stuff but I have to otherwise nothing would get done! I'm 35, well almost 36 but I hate how time flys! I can't believe that it feels only a second ago that I was 21 looking forward to life .. I went to university (college for our American friends) I was on the cusp of joining the police force when all this happened. Since then life has been one massive roller coster to say the least!
A couple of weeks ago my GP stopped my meds because he wasn't happy prescribing the amount I was on .... I phoned the pain clinic nurses. One I had seen called Julie had said if I had any problems at all just to ring. I got though to the new nurse that they have just trained up. She is from Malasia or somewhere like that. Her English is ok but she finds it hard to understand people ... And that's not due to a language barrier but the way she has been taught to nurse. There is no care or compassion just her ideas on what is right and wrong. I spent half an hour trying to explain what the issue was. I was crying down the phone because she just didn't get how to help me. She made me an appointment to see them the next day at 3pm. So I said ok. I then put down the phone and looked at my calendar and realised that I had a GP appointment at 4.30 and I could get from Leeds to Sheffield in time to make that appointment (which I had waited 3 weeks to get!) I rung her back and told her and she said well you will just have to choose which one you want to go to!!!!
Luckily next day Juile rang me and asked why I was going up when it was clear that they couldn't do anything for me! I told her about the GP and she arranged for the pharmarsist to call me the following Tuesday. So I waited till the Tuesday and I git a call from Julie .. The pharmastist was off sick ... Typical! So I had to go and beg and plead for my patches 11days ago with the doctor. He prescribed sone more but said he really wasn't happy! So now I'm waiting to see the pharmarsist and a psychologist on wed next week to see what they can do to help ... But I'm not holding my breath!!
So yes I feel for you totally .. It does seem that we have walked the same path as each other! As I said before if it wasn't for my boys I wouldn't be here, I'd have taken an O.D. Of my dad's insulin and said good night to the world! ( I'm currently on antidepressants and having counselling for depression as well!) I hate that my condition has such a hold on me when I should be enjoying life!!!
I came on here after doing a questionnaire on pain for the university of Huddersfield on chronic pain. They are going to track my pain for the next six weeks on this app to see how pain affects me.. But I'm so glad that I came across this app and this community! Xx😀
Hi saz... i was born in huddersfield! Lol (just one more simarlarity) i ended up down south after being adopted in 1972, if it was not for thst we may have been sat at the pain clinic together! Strange huh?
Anyway if it werent for my children i would def have checked out years ago... i have felt that desperation many times. I have never spoken about it to anyone other than my hubby... and him only six weeks ago! Its the ugliest part of it! (I cant leave my dog either, he saves me when i am feeling particularly weak) ... my kids are 16, 20, 22 & 24... i dont see them very often as they all have lives of their own! (Even tho 3 of them still live with me) my youngest starts college in september... hes 6ft tall with a beard... he looks like a man bless him! Unfortunately i am very goòd at hiding my pain... so even tho i live in a house full of people... i am very alone!
So I spend most of my time at home unable to move... i would jump at the chance to get off all these meds and go on methadone if it could give me the strength to cook a meal or clean my house... omg or just push the mower round... im watching my front grass start to go to seed lol... i miss being able to stand up without wanting to rip my spine out!
But hey ho... i reduced my med load for them, yea im back to being housebound barely able to move lol. Ive also lost 206lbs thats about 14stones in weight which is so awesome... but i look fantastic compared to before... so noone seems to understand i am such serious pain... when i look so great! I can move so much easier now... but i lost all that weight by spending almost 2 years on my back eating only porridge every 2/3 days cos i felt so nausius with the pain... not the greatest diet in the world!
I also use patches every 2 days... ive sucked it dry by 48hrs lol... my pregabalin is down to the bone for me... i think it may either go up again or they may give me tramadol again for breakthru pain. i take 4000mg of paractamol a day... dicofenac 150mg a day ... oh but by far i Have found THC is the best for break thru pain, and all my dr's agree, i have a guy whom makes a THC cream that i rub on my lumbar/sacro area too... that helps a little too (like emugel or volterol cream). i've worked hard to reduce all these meds... but to what detriment??? The NHS makes me feel like an addict... but i think i may be dependant on these drugs to function at all... i dont know where to go from here lol!
I am finding this app really good too... like u, i am trying to record my pain each day for the pain clinic over the next 6 weeks, its uncanny the parralel similarities between us :)
I would love to connect with u hunni, so PM me if u fancy a chat on email or skype even... hope ur day is a little better than yeserday xx
Hi Lulabel, I sent you a personal message. . So we can connect then we can email or Skype but obviously give our details in a private environment. . Sorry no offence to anyone reading this its just that I've had a stalker who has wreak havoc on my life! So I keep my private details as private as I can!
So yes please contact me via the pm!
We do seem to be very similar with our pain. I know what you mean about sucking the fentanyl dry before the 2 days is up! I'm now waiting for Monday when I can order some more patches and hopefully get them on Tuesday fingers crossed! !!
Hi Saz And Lulabel, I'm down in Bath and my spinal conditions sounded exactly like yours!! I'm 36 but I was born with Spinal Stenosis of the entire spine, I would've ended up in a wheelchair at some point, but unfortunately I had an accident a few years ago now and sustained spinal cord injury from C3/4-6/7 incomplete injury, so have some function in arms, breathing is harder as my diaphragm is partially affected, and also T7/8 Complete injury so I'm paralyzed fully from my armpits down. My pain clinic have been amazing too, until the specialist nurs left 2 years ago and they didn't get a replacement until the end of last year, but everyone loved the previous nurse, she was just the type of person who knew exactly what needed to be done she was empathetic and made sure all avenues had been explored. I think I've done well with my GP,she is absolutely brilliant and again she knows me and my character so knows what can be prescribed on repeat and such as she knows my medication patterns and I've always felt that she keeps a very open dialogue between us both as I say how I feel about my meds(I hate taking them, but we have to otherwise it gets messy) and she will suggest whether we need to go up or go down with amounts of my medications, same with the Pain clinic as they work very closely with my GP, which is quite rare!!!! I'm on a Admissions Avoidance Plan at my surgery because I'm complex,it's called a virtual ward and have a community matron who sees me weekly so I don't have to go to the surgery so much. I'm CHC funded so the NHS pay for my primary care needs, as I have 24 hrs care and lots of equipment etc. It's always interesting to find people who have similar conditions.😊
Well ur in good company... altho i am still very lucky to be able to walk... i have been told, if i sustain another impact injury... i may not have that choice... so i push my physical attributes to their limit b4 i will get in my wheelchair... i have to walk with crutches outside... but im a buggr... and that attitude pushes me to "move it or loose it!" This being said... i do understand completely... ithis is my first time reaching out on a forum for many years... so i have never spoken with anyone with any of my symptoms before... i am really isolated since moving away from all my friends 13yrs ago...so thanQ so much for sharing ❤
Hi Hsmommy1, What is it with men that won't take no for an answer! ! Mine I had been on date with him and he told me he loved me ... I ran as fast as I could away from him! But he found out my address and just tortured me for 3 whole years! It finally stopped when I got the police involved. . He finally got the message to leave me alone!!
Dang, the UK pain management clinics sound incredibly horrible....I thought we had it bad here in Texas. All I can say is, I am so sorry on behalf of the nursing profession, (retired nurse) for the lack of empathy and for all of their preconceived ideas on what pain "looks" and "feels" like. Clearly, some nurse on only in it for the money Love, to all Terri
Saz, mine was a co-worker (ironically we worked at a mental health facility). We were in a fairly small community. He would follow me to & from work, picking up my kids, grocery shopping. We moved away & that ended it for me. He was also stalking a couple of other women from work. I don't know how it is now for them. As a kid, I lived just down the street from him & I often wonder if the stalking started much earlier than I even knew.
I had years unable to get out except Doctor. Missed my kids stuff because the vibration killed me. Today I still don't drive but I am with my family and not crying every day. It's a difficult life being disabled by pain. I pray healing for us all.