Narcotics, caffeine and nicotine - then praying - then cussing-
Works for me!

Hey KateLynn, When I realized I had a chronic painful condition with no known cure (trigeminal neuropathic pain) I considered my husband my caregiver. We talk about what he sees, how he thinks I'm doing, whether he thinks I can complete tasks. I tell him if I'm having a really bad day so he can buffer things for me. So - find somebody who can stand to see your pain (some of my family members are in denial) and ask them to help you. Another life lesson I had to learn: be gracious in receiving. I was really good at giving but I felt that I would be "pitiful" if I had to ask for help. One other thing: Journal your daily life. When you're up to it, review it and see if maybe something triggers your pain. It'll also help you understand that you CAN make it through a day of hell.

Hope this helps.
Janet from Tennessee

KateLynne,

I've got RSD-CRPS since 1988. My story is after you travel your way thru the pain doc's, the meds, the depression, your left with yourself. It's such a mind game, how will I feel in the morning, can I go to a party this weekend, how many people have I let down.. YOU haven't, this is why I'm on this forum. You have to recreate yourself, stop beating your body up from things you can't control. Take one day, one hour, one minute at ah time. I have found out thru this group and people I've met here, I've wasted so much of my life it makes me sick The years lost, years on meds, things when I look at the photo albums I'm not there. Don't let this happen to you, fight for everyday you have. Has far as people in your life they love you for whats inside, not the pain...

s, many hugs.................


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I am the same way, I have not been in pictures for years. I take them or I am not there.
I totally am with what sadly is saying.....we are great here....if I do say so myself. If you need shoulders.....we got plenty!

Thank you for the support! You are too sweet!
I am having a rough time lately, I feel like my reflex sympathetic dystrophy is getting worse and worse.
I have been majorly misunderstood by a friend who thinks that I should not take any medication for pain... and I am so upset over the situation.
I am on narcotics, antidepressants and anticonvulsants, all to help with the pain. I know that Lyrica is working for me, and it makes me hope that with an increased dose I might get more pain relief.
It has been pure hell for me lately, and I am in such severe pain. I try and not show it to anyone around me, but it is so hard to live with all this pain.
Does anyone have ideas on explaining to a friend why you take meds when you have chronic pain?
Thank you so much everybody for the hugs and kind kind words! Idealist~ hey that sounds like a great idea about setting goals. I will have to set teeny goals because of my pain and limitations.
Thank you so much, everyone. I really was helped. And thank you SO much, sadlyme and Janet and Idealist. You all were a great help and I can't thank you enough. I can use your prayers and support right now, and can you please give me an idea on how to explain to my friend??
Thanks!!!!!!!!!

OMGoodnes, first, you don't have to explain to anyone why you are on pain meds or anything else! Your sick, they're not. If they can't see the pain; maybe they should take a better look at your life. This is all to common with anyone who lives a life filled with pain. Always trying to please everyone, but YOU... I know where your at, I live your life, coping skills and mind games is all I have left. Take the weight off, let someone please you for once!


Thinkin of you,,,,

Thank you very much. I feel like I have to explain, because she was so firm about it. I want to explain to her that reflex sympathetic dystrophy is the worst form of chronic pain in the world today, as I read about the McGills pain index scale. I want her to understand the condition better- why it is needful to have medications and I want her to realize the suffering I am enduring- it would be so much worse without the pain medications. I don't have to explain, but I want her to understand me better. Know what I mean?

Hi Kate. First, I hope you are feeling better today and that things have worked out between you and your friend.

Second, I want to let you know that I have just gone through something similiar, but with my DH. I also have MS, along with my spinal problems, but the MS pain is the worst He has always been so very supportive, and does understand that I am in pain. The worse I get, the MORE he understands. BUT, when he found out I started Oxycotin, all he could think if was "addictive and dangerous!!". He gave me his thoughts on it, and I had to do my explaining to help him understand. Now, being that he is my husband, I DO think I owe it to him, even if it is just to set him straight on the reality of narcotics.

You DO become dependant one them, no doubt. But there is a big difference than being "addicted". We are using them for the right reason, and it's not to get high! And they are only dangerous if you are not monitored correctly, or if you are not taking them as rx'ed, crushing them, etc...

Now, after I asked him what his point was that I would be dependant on them, well.... he did not have an answer That was it! lol

I agree you owe your friend nothing, well, except to remind her not to judge you unless she has been in your shoes. If you have explained your pain to her and that you are under a DOCTOR's CARE, and she still insists on judging you, I think it's a mute point. I hope you can keep your friendship either way though Best of luck to you!

I still have a difficult time coping with the pain from day to day. I had problems with my second Thoracic Outlet surgey and I developed RSD soon after. Now I am trying to learn how to cope with a whole new pain.
I find that if I try to keep moving which can be very hard to do on some day I don't get as stiff and than I don't have as bad of a deep muscle pain or joint pain as I would if I sat or stayed in bed for hour or days.
I have many other medical conditions so there are some days that I can't do anything more than stay in my house and use heat packs and pain pills. Oh, and my Tens unit.. That and my meds... I can't leave those out..
I also started to see a psychiatrist and she has been such a blessing to me. I am able to talk about my pain and my fears to someone who doesn't judge me such as some of my friends or family. She also told me to try to go outside and sit in the sun for at least one hour a day. I can break that up into sessions of 15 to 20 min. I find that this helps with my depression and therefore it helps me to be able to try and cope with my pain.
I also find that I have many friends here on neurotalk that have great ears and listen to me whine...
I hope that you are able to find better days ahead...
Many Gentle Hugs
Dawn

yeah, I have very few pictures of me... I don't let anyone take my picture, I just feel way too miserable.