Hi all ,
Very basic question for a very complicated situation.
background:CRPS as a result of a fall into a concrete drain and has left me with bulging discs that are sitting on spinal nerves and loss of leg snsation blah blah blah..see my other posts for full details if you wish but its not a kind tale to read..
My question:
Been battling with the will to take meds and unfortunately for me the gp has begged me to take endone(4 x a day-had to get a special permission letter cause all tablet boxes given at once) and she also wants to up the lyrica to the 75 mg which for me means i dont even remember what day of the week it is when i take the 75mg,(was taking it originally after the fall 7 yrs ago) and stopped after 2 months cause the side effects are awful as so many of you know.
This is a heck of a lot of meds. im just completely failing with regards to taking them,the pain is insane but drugs/meds i can only think of as poison due to a horrendous childhood but that's another story.
GP knows this but ive gone without meds for so long shes very insistnent
Has anyone got any tips to getting your head around taking meds??...the very idea of drugs makes me sick to my stomach :sick: literally and figuratively and i'm so dizzy from the lyrica when i do take it that i cant even get out of bed till it wears off so therefore i just dont take it cause i want to function,yep easy solution except the no getting to sleep part if i don't .sigh.
rock and a hard place
really struggling
any tips greatly appreciated I'm sure there's lots who struggle with taking their god awful tablets , iv got away with managing without tablets for many years now but its time to give in.the question is how?
Thank you in advance
Kitty
Hi Kitty,
No one likes taking medication at the best of time , so you are not alone, at one stage through my drug trials, I was popping 45 pills a day, and that was just to control pain, not counting my cholesterol and heart meds, now I take a total of six in the morning and four at night, only four tablets out of that number are for pain, being a slow release morphine based, and the only full time pain med my system tolerates, I do use endone on bad days for breakthrough pain, usually two with two panadol, but have to put up with side effects, so try to limit it's use, at times though the pain is that bad I bite the bullet.
I think you have to get your head around why resent taking meds, at the moment you are breaking the cycle for meds to work, by taking them and not taking them randomly, for them to work effectively they have to build up in the system to a certain level, in most cases mild side effects diminish after a couple of weeks of regular taking, it also makes pain levels worse by the random taking. I would ask your GP why not put you on slow release pain meds, this really needs to be worked out by a pain specialist, it is much kinder on the gut, it also cuts down on the amount of medication you take, you may still need endone for those bad days, but that will be your choice also get my meds webster packed by the chemist, mine does it for free and home delivers them for free also, takes the pressure off getting the containers out of safe storage, it also takes the hassle out of packing your owns meds and renewing scripts, the chemist handles it all.
I have also worked out which meds to take with which, some you can't take together, even if they don't mention any interactions, but this was done by trial and error on my behalf, I would like to take them all at once, to get it over and done with, but that means putting up with unwanted side effects, I had to endure a lot of them during drug trials, which were my darkest days
Anticonvulsants and Antidepressants have shocking side effects if I take them, if it was just the brain fog it wouldn't be too bad, but changing a personality is a different matter, especially when it involves violence, actually just about all medications to treat pain my system doesn't tolerate, but they insist I can't stay on this one med, I have to change, a recent trial at changing proved disastrous, shortly I will have to try again, when my GP gets the letter from my pain specialist, they want to find at least two pain meds I can tolerate, so they can rotate and extend their long term use.
I also have a neurostimulator implanted, in combination with my pain meds, has reduced pain to a level where I can get some sleep, I went three years with very little sleep, so know full well how sleep deprivation impacts on the human body, both mentally as well as pain.
I am in a similar position as yourself, my lower back is damaged, has permanent nerve damage, no feeling in my left leg from the knee down, but have a hypersensitive heel, foot droop and muscle wastage, but with the no feeling comes another drawback, hot and cold signals are about face and change in intensity or lack of, I also have problems with spasms, when they hit, I hit the floor, my legs go straight from under me, at night in bed it's like being in a washing machine, when they hit.
Surgery on my back x 2 didn't help, in fact it made matters worse, as result of scarring and bony growths, pain is slowly moving to my right leg, further surgery to remove this is not an option, it would cause more problems and more damage, so be careful going down the knife path, get all the facts before going ahead, if I had a choice all over again, I would not have gone down the surgery path.
Don
Hi kitty14,
Don has given you some very sound advice here. Meds. do need to be taken exactly as prescribed or they will not work. I have a cousin who said "I am not a tablet man". Well, he had high blood pressure and he took his meds. very occasionally. He ended up having a major stroke and he is now paralysed on the whole right side of his body.
Obviously not taking pain meds will not have such a dramatic outcome, but you won't get pain relief either and taking them occasionally will mean that you won't get rid of unwanted side effects. Everyone reacts to medications differently. Don has described to you what happened to him and we have hundreds of people on here who have had many different reactions to medications and some people don't have any. My husband rarely has reactions to any medication.
It't a matter of giving things a try and working with your doctor to see what is best for you. However, if you are so fearful, I think that it will be hard for you. Have you discussed your fears with your doctor? I think it is very important that she knows how you are feeling.
Also, pain management needs to be what we call multidisciplinary for the best outcome. That means getting into a pain clinic if you can. However, they are usually run out of major public hospitals and it can take time to get into one. You would see a Pain Specialist, a Psychologist (no - that doesn't mean that the pain is in your head) to help you with relaxation (very important) and to help you with any fear that you may have. I was petrified until I talked it through with a psychologist. She helped me to see that I could still have a life as well as pain. However, the psychologist must be experienced with chronic pain patients. Then you need a physiotherapist who is also familiar with chronic pain patients.
I believe that a lot of this can be accessed through a care plan if your GP will write one up for you. That way you wouldn't need to wait for the pain clinic (although I would still get a referral and get yourself on a waiting list).
I think that you have to go along with what your GP is telling you, however if you are on a low dose of Lyrica and you haven't been taking it regularly so you can adjust to the side effects, maybe try that first before you take the dose up. Don't take my word for it though, discuss it with your dr. We cannot give you medical advice, but we can give you support.
Mary
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Kitty, to go in theme with your topic title, I'd say a combination of all three - and I'm much the same in my general attitude. I detest taking meds - and before I developed CRPS & my other problems, I rarely took so much as a panadol.
I think you always have to take each med on its individual merits - look at benefits vs side effects and how each affects your quality of life. I took nothing for a long time, but in the end gave in because it became a choice between becoming totally disabled by pain, or taking meds and having some, albeit variable, quality of life. That's got harder to manage as my CRPS has spread (& not helped by multiple vertebral fractures 3 years ago) - I've also had a spinal cord stim the last 8 years and a pump the last 6 1/2 - but they still make the difference between being either bed bound or totally dependent on my chair, not able to be touched, and being able to do a bit of craft work, play with my dogs, spend small amounts of time in my veggie garden and so on.
Also agree with Mary about multidisciplicary approach. There's no one thing that works for dealing with pain, and CRPS is often so much more complicated, never mind also having the extra issues that you have as well.
Laura
