How do others help deal with pain.........???

Hi,
I know PAIN is a huge part of living with lupus for most of us .......dealing with it,treating it and trying to cope with it as best we can.It is certainly NOT an easy or pleasant part of our lives with lupus and I would love to hear from others on this topic.For me, pain has been a huge part of my life for many of my 23 years living w/ sle and fibromyalgia.I have tried many different ways to deal w/ it and I know I share this frustration w/ many others.....that pain is indeed a real pain to deal with!!! I have tried many methods over the years from biofeedback,acupuncture,massage,narcotics,hypnosis,anti-depressants,muscle relaxers,tens unit,exercise......just to name a few.And there is no easy fix or a solution that has worked on a regular basis.
As you know, I am currently in the midst of a very bad flare up that has been going on for 9 months now.And pain has been a constant thing and a constant challenge throughout this entire time.Currently I am taking Methadone 20mg. every 12 hours and Morphine 30mg. as needed for breakthrough pain.I also take Baclofen 10mg. 3 times a day.I am also getting Acupuncture once a week for the past month now.I am now somewhat able to "tolerate" my pain and on a scale from 1-10 it is usually a 7 now where before it was almost always a 10.So, I must say that although it is not a HUGE improvement, there is some improvement, and for that I am very grateful.It wasn't an easy road to get to this point and to put it mildly; it was "hell!!!"But at least now I am able to function better and can finally see that some improvement has been made.
So that being said, I hope to hear from the rest of you on this topic.....thanks and may all of you too, find some relief from your pain!!!
Warmly, Barbara

Barbara, I don't know if this really helps you deal with your pain, but honestly, when i came onto the forum, I was in my flare and the worst flare I have ever been in, mind you, nothing like the flare you are in, so you can call me a wimp compared to what you're going through, but it has been rather painful for me and I haven't felt like even going to the grocery store because I have been so tired and have been in so much pain. And to think that I have been in my flare for 2 months compared to your 9 months just makes you my hero. You give me inspiration and you make me say to myself buck up camper! You are always upbeat and that is so admirable. I know you are in pain and I know it seems like it has been an eternity, but try and hang in there because you are seeing that there is a little relief and a light at the end of the tunnel. I hope that every week gets a little better and the accupuncture helps because I certainly think that if that is working for you it is better than taking the narcotics. I'm glad you are getting some relief. A 7 is getting than a 10. Hang in there girl!!!

Barbara, since I am such a newbie to this illness, I don't feel like I have a whole lot to offer you - someone who has had it for such a long time. It looks to me like you have tried almost everything you can and then some. At least it is starting to work for you.

I have tried pain meds (of course) - but I hate taking them - so they are a last resort. I have used heating pads, hot tub, homemedics massager with heat and different settings, Bio-freeze gel, swimming (exercise), aromatherapy and meditation. I also try diversions such as watching comedies on TV - I love to laugh, hobbies, window shopping (sometimes just getting out and walking around). I would love to do volunteer work - just can't commit right now.

This forum is so helpful, too. As Monica said, you and everyone else on here give us inspiration to "get moving" and stop feeling sorry for ourselves.

I may not have given you any new ideas but I want you to know that I understand your pain and pray that you will get even more relief soon. Thank you for always being there for us when we need you.

Thanks all....I wasn't looking for new ideas, but was just curious as to how others deal w/ pain......that's all!!!!I appreciate all of your support though and have a good weekend my friends!!!!
Warmly, Barbara



Also.....I wanted to get this thread started so thers could share their experiences as well!!!!

Hello Barbara
The way i deal with pain is complain to my wife no not really, but she does feel bad for me( or says i told you to take it easy)
I allways have some sort of aches and pains and on a scale of 1 to 10 i am usually at a 3 on my good days ,then on days if i get to a level 4 or 5 i go for the pain meds that i take as needed for a couple of days and if that doesn't work i call one of my drs and say HELP me!!
I have allways had a high tolerance to pain but when i met the wolf my tolerance range went way down, i could deal with pain in one area at a time but not 4 or 5 places at a time.
The worst pain i have had to deal with is four yrs ago my rheumy set me up to have facet injections in my spine from 2 thu 7 dics because of my ra, or have surgery to lock my neck where i would lose the use of it. I said lets go for the inj. Needless to say they can not put you to sleep to do this and on a pain level i put it at a 15. i told them that it would be a cold day in HELL before i would do that again,but guess what it gets cold about once a yr and i go back for them again, even tho i know what i am in for i do get relief from them and still able to keep the movement of my neck
I also enjoy a hot bath or shower or listening to music on native radio.com
Well thats enought about me dealing with PAIN, my fingers are sore, i've never typed this much at one time in my life

Everyone take care from the yardman
Ray

Hi Barb, Monica, Poppy and Ray,

First of all I have got to say Ray, when I read your post and you said about the Facet Joint Injections and it "will be a cold day in hell before you had it done again" I cracked up laughing ! I had 1 Facet Joint Injection in my lower back on Thursday for the first time ever and I said the exact same thing!!!! I rang my Mum because she has 6 done every 6 months and asked her how the hell she does it cos I will never have it done again:affraid:!!!!!! I will probably change my mind though if I have too , I have to have another Injection next Wednesday in the Bursa Sack (Bursitis) in my left leg and I am not looking forward to that either!!!!

I use to have a very high pain tolerance until I got Lupus and then it ran away ! When my pain is really bad I get into my bed and put my electric blanket on high and it helps immensely, I also take slow release Oxycontin and Oxycodone for breakthrough pain, both of which keep my pain under control. I am hoping that when I get my left leg inj. I will be able to just take the Oxycontin SR and not have the need for breakthrough pain meds as my joint pain is really quite good at the moment! I also find a warm bath is good for my pain too. One of the main things I have learn't is to not let it get out of control because the longer I leave it the harder it is to get under control and my Dr has told me off on numerous occasions because I would let my pain level get to a 9 before taking breakthrough meds, but as I said to him I still want to be able to tolerate pain not block it out all together because I didn't want to pick up a pill at the first hint of pain!! I hope that made sense!

Well I have rambled enough!!!

Take Care
Love and Hugs
xxxMaz

Are the facet injections anything like a spinal tap?, as they sound scary as heck! I am familiar with spinal taps, which are not comfortable.
After all the trama/turmoil of going through something like that I sure do hope FI's work.

I never had such long and unrelenting pain until I had a flare for about 3-4 weeks in May. I was having pain in certain areas for 3 years. I always tried not to express the full extent of my pain to others so that they wouldn't worry. I changed my mind - out with it now!! Full body pain I cannot hide and I cannot take. I would have done or taken just about anything to make that pain go away. It hit me all at once and I had no idea what was happening. Now that I know I have lupus, I know what to expect, just not when, and I feel better able to handle the flares (yeah, right). I also have three doctors, my PCP, neurologist and rheumatologist as back-ups when needed. I just feel better knowing what I am dealing with.

P.S. I know this is just a drop in the bucket compared to rest of you.

Hi All,

First off Chris.....your experience with pain is NOT "just a drop in the bucket" compared to the rest of us!!!!I believe our personal experiences with pain cannot be compared to anyone elses.It is real to each of us and really, there is no comparing it to one another.Over my many years dealing with pain there have been ALL types and levels of pain I have and continue to experience.And pain is so hard to describe and to control as we all know!!!! I started this thread so we could all share what has helped us....I don't know about all of you, but I am willing to try almost anything that can possibly help to decrease my pain!!!!

Secondy.....to Karen, I use to get steroid epidurals every 3 months for over one year, on a regular basis.Like Maz described, it was very painful and uncomfortable.....to say the least!!!But I did get enough relief to make it all worthwhile.I had a very bad sciatic pain in my back and this was the last option before surgery(which I opted NOT to get).This problem seems to have "left" me now as my sciatic only flares once in awhile and it is not too severe.
I hope this helped some.....???? Warmly, Barbara

Just following up with you Barb, how are you feeling these days. Are you feeling any better? Monica

never mind Barb, found your other thread with an update...thanks!!! Just checking on you. Monica

THANKS Monica....... I so appreciate your caring!!!I hope you are doing o.k. these days and am thinking about you as well!!! xoxBarb

thanks Barb... I am actually feeling a little better each week. I have my good days and bad, just as we all do but overall, I am starting to see a light at the end of the tunnel. I have actually cooked a few meals in the last couple of weeks to my hubbies surprise. I have lost so much weight I needed to some new bras and finally had the energy to go buy some (that my hubby was NOT happy about .) Sorry Ray, TMI. But I am just thrilled to some energy to finally be able to go out and run errands again. I am so excited because I am taking my daughter Friday night to see Wicked and I didn't know if I would feel like going but I do. YIPPEE!! Something she has been really wanting to see and we are desperately needing some mommy/daughter time since I have been down for so long now and I feel I am up for the night. I just hope I don't turn into a pumpkin as I usually do around 8pm but I think because I will be excited to be with her it will be an exception. It is such an amazing play that I am thrilled to see it again anyway. Thanks for checking on me too! Monica

Hi Monica,

Wow....what great news that you're feeling better!!!!I am so happy for you my friend. And I can relate to needing new bras....I just haven't gotten around to it yet!!! I hope you and your daughter have a wonderful time at "Wicked" and that you cherish your special time with her. It's amazing how feeling better after being down for so long really lifts your spirits, isn't it?You deserve this and may you enjoy it to the fullest.Take care......Warmly, Barbara

Monica

Don't be sorry for me , I am gald also for you feeling alot better. I don't quite understand your hubby not being happy with the new bra thing and don't need to
Again hope you and your daughter have a great time out.

I know i posted this off tread,everyone forgive me

from the yardman

Take care
Ray

I know Ray, just razzin ya. I know you have a wife and a couple of daughters. You are out numbered with estrogen in your house and on this board, aren't ya? hee hee....

Thanks for both of your kind words Ray and Barb...

Monica

Well, for what it is worth....

My Rheumatologist has just started me on Lyrica to help re-set the brain centre in my brain.

He described it a bit like this......

With all the pain messages we get in the pain centre,( it is being basically bombarded all the time) it becomes overwhelmed (picture the cringing person, arms folded above the head). The Lyrica steps in and resets the brain centre so that it can cope better with all the messages of pain and thus we tolerate and cope better with those pain messages....

I hope that makes sense. I have only been on this since last Monday and already, I am noticing a difference.....

Just another way of dealing with it all.

Hi Jenny,

Just curious, what side effects, if any, does Lyrica have? Thanks!!

Hi Christine,

There quite a few, as per usual but if you go to

http://www.softtissuetherapy.com.au/forum/threadView.aspx?id=794

http://www.virtualmedicalcentre.com/drugs.asp?drugid=3143

It should answer some questions for you.

It is primarily and anti convulsant used in epilepsy but also has good nerve pain properties.

I had the 'spaced out' feeling, my words wouldn't come as I like them to, I can lose my train of thought mid sentence, I have had a few shaky feeling....to me, all comparitively minor things to put up with for the feeling of being able to move and get about almost pain free. It is an expensive drug, apparently.....I have not bought any yet as the Doctor has given me two weeks worth to try. I will be getting my prescription made up though.

Hope this helps......