I'm not sure I've ever taken New Year's resolutions seriously since the joke is that they are always broken. However, I publicly stated two last year and actually achieved one of them, to my surprise!
I planned to get my pain levels under control and succeeded. It's been several months since my last serious post but I know I blogged about my stress over switching pain medications (click here). This change was one of the best decisions I've made in a long time though. I can say that my pain is generally now ~2-4 on the pain scale on a daily basis. Of course I have my days, my injuries, and seasonal/hormonal issues that impact my general well-being, but I feel more in control of my life and less anxious about long painful days.
Hooray!!!
Good for you! This is my goal for this year, to learn to adjust my life to live around my illness, rather than constantly fighting a losing battle. I'm coming to grips with the fact that a life with EDS is centered around proper pacing, and that while I don't have to give up everything, I do need to ration my "spoons".
ReplyDeleteI'm curious... what pain medications did you settle on that work well for you?
Hi Jette,
ReplyDeleteThanks for visiting my blog. I added the link to my previous blog up above so you can read more details about my meds.
In brief though, I started with aleve, then added tramadol. By early last year, I had gone from taking the tramadol once in a while to needing to take it every 3-4 hours. Unfortunately, that was leaving me in pain every morning because I wasn't getting pain coverage during the night. So, my doc and I discussed options and came up with a low dose of extended release morphine.
Fortunately, I don't experience a lot of the side effects some EDSers get, though the first two weeks were miserable as my body got used to it. It's been worth it, despite the bowel issues I get (chronically hard stools). I manage that with daily colace, lots of fiber, and some great new toilets in my house! (you don't want to know what I was doing before the new toilets to keep from plugging the pipes...yuck)
As mentioned, not everyone can tolerate narcotics and I can't imagine what I'd do in that case. I still take aleve and tramadol every morning/night to jump start/relax me, respectively. I also have to take the tramadol or a higher dose of aleve if I have structural pain, which is what I call muscle spasms, arthritis, and wonky joints that flare up occasionally. The morphine barely touches that kind of pain.
All of this is in addition to my spoons, of course. I hope this info helps and keep up the good work - you're on the right path.
Gentle hugs...
Getting your pain under control is one of the most difficult and neccessary steps to take. I still haven't managed to find a cocktail that works for me, but I've finally found a doctor with ears!
ReplyDeleteSo glad to hear you're doing better on the pain front.
Hugs,
BubbleGirl
Thanks for your really useful comment on my blog Elise, I hope 2011 continues to be good for you in controlling your pain. I have also been on tramadol for a long time now and have been trying to reduce it as I feel my body has just got too used to taking it. It's hard though. Wishing you luck!
ReplyDeleteThank you for posting. You have given me the push I need to go and discuss with my gp changing my oramorph to slow release. Currently I take non slow release dihydrocodeine during the day and slow release at night. With the addition of night of oramorph but feel slow release would be more appropriate. Without going into boring detail i cannot take nsaids and tried fentanyl patches successfully for some time until they caused horrendous headaches which was a disappointment. I also take lyrica and diazepam. It sounds like a cocktail I know but at 46 I long ago stopped worrying about other opinions on my managing my pain. Along with appropriate pacing which is hard and not always possible in a rigid enforcement. I do try hard to manage my pain. I get fed up of reading on forums and the like about the addictive nature of the narcotic meds as the uptake is entirely different for the chronic pain sufferor versus an addict. However, I still am unsure whether after all these years the dihydrocodeine is entirely the right thing and wonder if tramadol would be more effective. I suppose I have an inner fear that if I query too much I will go back to the beginning and be in total agony too often. Osteoarthritis, osteoporisis and EDS are indeed a painful combination so I am grateful you are blogging again because it is really only via this medium that I am able to discuss properly the ins and outs of EDS with people that understand.
ReplyDeleteBubblegirl - methinks you deserve a complete pain management regime. Further to your comment over at river's blog and here. Its not fair that your pain is not being addressed.
Apologies for the long comment. Its so good to come across another blogger with EDS who 'gets' the reality of living with this misunderstood condition.
I am sorry you have had a rough time and hope the future is brighter.
Wishing you luck from the UK.