Jan

I know most of us will never be pain free. I do believe in at least trying out meds to see if you can improve quailty of life. I went on long acting meds to stay more active. I don't want to live in agony anymore than I have to. I was laid up all last year while getting those RFA's and having them repeated because he thought he missed. I will never put myself thru that again. I choose life and if that means medication, then thats what I will do.
I wish you well and hope you find good pain relief.

Jan, I spend most of my time in bed. It's part pain and part limitations. I have physical limitations that prevent me from using my legs for very long. My arms will only work for so long. Yes they have pain, but it's the limitations that keep me down.

I guess what I'm driving at here is are you down because of the pain or the limitations? Though I know pain can be limiting we all can fight through it to a degree.

I'm loopy today too! So I hope this makes sense!

Hugs Sweety!

Our Sweet Jancam,of coarse you want better quality of life thats my goal..Just being able to finish my dishes is not exactly what i have in mind for a great day(lol)I have been mostly in bed for about 2 yrs now,,I can only read so many amish novels!!!Along with the pain management this year Im starting what Im calling,nurturing me program.For me that means i have to take some meds(last year i took only aspirin!yikes)Also it means relaxation,hot baths,and proper foods.I am learning that what i eat really effects me.I wish you all the comfort and love and healing you need.

In the same boat JC, i'm alive without a quality of life, hmmmm.. I sort of function on a 4 -5 everyday with meds, n, so grateful to be at that.... but,.... would love to be a 2-3.. just to enjoy things a bit more, ie being social etc........ I don't know what to expect from pain management and what is an acceptable level of pain to live with... Thanks for bringing it up (((Hugs))))....

Thank you, Saab.
I didn't mean to be whiny...
I do get a lot of pain relief....without meds, I wouldn't even be able to be on computer.
I do have good docs, great (if kids driving me nuts at the moment) family..
And you guys have been a joyful lifesaver.

That's why I question....should this be enough?

Meds have caused me complicatioms that damn near killed me...
But the fentanyl with b.t.'s seem to be on the right path....

I want the path to be up....out of bed.....not dancin' in the streets (wouldn't that be fun)..... just participating in life a little outside of my room.
I can't figure out what to accept and what to try to change?

Hugs.....jc..

Thank, you three...typing at same time.

jc it is okay to want more. My pain specialist believes that you should be medicated to the point that you have a life. You can not have a life when you are so distracted by the pain. I can't anyway. That isn't saying that I don't spend some time down and housebound during surgeries etc. But it sounds to me like a good conversation to have with your doctor for sure! I am always working towards participating in life as much as I can and it is a fine balance. You don't want to so loopy you can't but I know it is possible. Sabb is right, most of us will never be without some pain. But we can get very close. Have you ever read Living with Chronic Pain by Jennifer Schneider MD? Great book that has helped me a lot. Take care and please do have this conversation with your doc. Wishing you well.binetp

Toni....mine's some of both....a lot of muscle detioration....
But pain stops me more than anything.
Not fear of pain....I've done that....but pain.
Free...thank you, hun
Seek...I'm so sorry you're in this damn boat, too..but I couldn't ask for better company. Hugs....jc

Thanks, binetp...I will definitely check I no that book
Hugs....jc..

That is a fair question. I think each person on the board has different pain. Some have low pain days and others never make it to the comfort of being able to do much more than breath.

When I first came to DS I almost ran away because I felt like others were suffering far more than I. At the time I joined I was in a major flare and my pain was not controlled well at all. I still have flares and most days I push myself to do some movement. I don't have limitations on the lower part of my body. My limitations are upper body. Reaching, bending my head, and that sort.

There are many things I can't do that I used to love without causing a big flare. When that happens then is I am down for the count because I just want to take my head off my neck and sit it down beside me.

Jan my real answer is want more. There are options aside from just narcotics depending on what causes the pain and the limitations.
For example: Warm water pool. Anyone who would drive you for a lunch date. Is surgery an option? If the pain is spasm related is there something that helps in that area?

In the end if it is adjusting your meds for pain relief and your body can tolerate it I would do it.

I have a very good friend on here that gave me valuable advice. She said start low and go from there. Only you can know.

love and peace
hippy

OMG- it is SO okay to want more! I agree that you should be medicated to the point where you can not just enjoy but LIVE your life. There's no shame in laying in bed if you have to, though! I've been spending more and more Saturdays in the bed, just catching up on sleep and I feel terrible b/c I feel like I'm robbing my son of a mother. But then I think about how snippy and uncomfortable I'd be if I did NOT catch up on sleep, and my son would NOT enjoy me that way.

If you need more meds to function, I'd hope your doc would agree. I know I do less now b/c my pain levels are higher, but according to other people's estimates, I guess I'm pretty high functioning. I always say my pain (when properly medicated was a 1 or 2, more if I overdid it.) Now with the change in doses, (less breakthrough meds and a higher long-acting) I've been saying a 3 or 4. And so much depends on Winter. But after reading this thread I think maybe compared to a lot of people I really am only a 1 or 2 when on my meds.

I worked (writing) 3 hours today with a 2 year old jumping on me every 10 minutes. I researched potty training, put together a potty, and cleaned the family room. Made lunch for Jaden and then HAD to sit and was glad the morning was over.

My pain level is up but we just had a big snow and that will do it. It didn't stop me from vacuuming and scrubbing the kitchen floor this afternoon and doing my son's laundry, bedding and all. It sounds like so little compared to other moms, but at least at this point I can still do it w/o crying.

At this moment I'm giving Jaden a bath (or he is giving ME one) and hating my hubby for bowling twice a week. I KNOW it's wrong but once a week is enough! I've really had it b/c I KNOW my RSD is getting worse and I keep getting sick, which is new. Jaden and I both have little colds and my acid reflux is waking me at night. If my schedule weren't so crazy, MAYBE I could sleep normally?

It's like you're thinking that more pain meds would help you get out of bed. I get it- we ALL wonder. It's VERY possible! Maybe your Immunologist could talk to your pain doc? I recall those 1st weeks of having RSD when I could do nothing BUT lay in bed. I was scared to get up b/c I was tired, scatter-brained, dizzy, had terrible dry mouth, constipation, and just felt...odd. But THAT passed!

And on the day I was diagnosed, there was a resident working with the doc who diagnosed me and he told me I'd be in a wheelchair by the time I was 40 b/c of the way RSD spreads, etc. He had a relative with it.

Well, I'm 43, am NOT in a chair, still work, am a mom and wife, and do as much as I possibly can. Are there days I WISH I could be in bed? OMG, yes! But for the better part of 14 years and 11 months, I've been running around the world, working and having fun. Just 3 months ago I went parasailing! I exhausted myself on that trip but it's a trade off.

If you think more pain meds would increase your quality of life- I think that is what they're there for! You deserve a chance at life, Hun, IF that will work for you. It won't be instantaneous, but it's a good possibility that it'll work. I say go for it! ;)

Good luck, and hey, you can ALWAYS go back. The bed's not going anywhere. And there's no shame in needing it. If my hubby were home I'd be there right now.

I'll pray for you, and maybe this Spring you'll be out and about! :)

Your ability level is based on YOU! Don't expect your body to function like anyone else's. And good luck with getting new or better meds. If killing the pain will help, that is what it's there for!
God Bless!
-Jen

Hippy and thailiajen....thank you both very very, much.

You all have shown me that I at least need to try it.

I have great docs who will help me if that is my goal.....

And it is........I don't want to look back later when it's not possible and have to wonder if I let my self settle.......I have to know....I have to try it.

Thank you all with all my heart.......hugs.........jc..

You go girl!! hugs! binetp

Ohh my the meds should help you ahve some type of life... At first all I wanted was to be medicated then after learning the damage the meds do long term I just did what I had to do... I have a VERY high pain tolerance from being in pain from birth.. but it has come now when I needed the meds to just get out and walk more then 10 minutes... And taking more now so yes I would think at least "trying" something stronger and see if it helps you get out.. and some times just getting out to a pool for 30 minutes your build strength up to do more.. just dont stop moving .. its ok to take 3 day breaks or what ever is needed after activitys .... Keep us posted on how your doing

jc...is it your stomach that is making you think about this?

Knowing that my digestive system shuts down, I feel like I want a life so bad that I don't care if I die trying to get it...started taking vicodin and I hear the intestinal noise starting already (4 tablets 3 days later).