anyone out there with auto-immune/chronic pain issues before dx?

I'm sitting here smiling sadly....I used to take one Oxycodone in the morning so that I could get in the shower. Then we had to make it an "IR - instant release" version so it would work quicker. Now I have to take TWO !!!!  So sad how we adjust and adapt!! I don't shower every day, why would I need to? But I do a couple of times a week. It is a real production, but I have hand grips in my tub area. I can't imagine lying DOWN in the tub!! How do y'all get back up????

I haven't been here in a while, I forgot to add it to my favorites.

I may be too late, but wanted to add that when you go for long periods of time without a good nights sleep (REM cycle) you adjust.  However, when you do finally go into a deep sleep/REM cycle you will have terrible, vivid dreams, but they will subside.  Keep trying the Melatonin.  I was given the sleep information when I had trouble years ago, then again when my daughter struggled with her neuro disease. 

Barb - I am so sorry for all that you're going through. I love your sense of humor and insight on various subjects - I can't believe you aren't surrounded by friends.  

There was a question asked about auto-immune, are we angry that it has taken so much.  I am not angry with it.  I feel that it is what it is and learned to live with limits.  However, I do find when my pain gets out of control I don't think clearly and I get very frustrated with my situation.

Hope everyone is having a good day - I'm adding this to my favorites so it doesn't get lost on me..... 

Gee Barb your life sounds so much like mine, painwise and also your thinking on freindship, the kind of upbringing you had is similar to mine,  I soo understand you ( I read a lot of your posts,  because I like your personnality, smart girl)

It's very hard not to think the worst when we are hurting (bladder), so I hope you get an answer soon, altough like we know in our Canadian system it can be long............ so hughs and good luck with your upcoming test

Welga

barbe- After just going through a scare myself I can completely empathize with what you're going through.  You've already had to endure so much, more than any person I know, and now this!  It is so unfair.  I know it probably feels like you're alone but you're not.  We are all here for you.  I can understand the friends thing, too.  My circle has definitely dwindled since I always feel I can't make plans or commit to anything because I don't know how I'll be feeling.  I had to cancel so many times that now I just don't make too many plans.  

jenn- Welcome back!  That is so interesting about the vivid dreams but it makes sense.  I used to have the wildest craziest dreams almost every night but haven't in years.  I never related it to the lack of REM sleep, though, but it makes sense.  I will give the Melatonin another try and see what happens.   

Getting throbbing pains in arms, left hip is killing me, pins and needles in muscles, head is tight, yes the fibro is back, and at least we have each other right?

love to you all!!!!

Crazy....and Barbe.......I'm right there with you.........           I HATE FIBRO and really really wish I could run and hide from it.......but we can't....

My primary set me up with a pain management clinic this week. on top of the fibro and everything else.....jabbing, stabbing, stinging pains in breast where they did the biopsies and exersion. They set me up for May 6th.....a long way from now, seems like, but it will be good to see if they can help in any way!
Hugs to you all.

Paula

She would never understand like someone who has it....will she think you're just asking for attention? I hope not!!! I got that one a lot though.

I think I am only now starting to realize how much my chronic pain has robbed me of my life.  I used to be a flight attendant but quit to be a full time mom.  I always had it in my head that one day I would go back since I loved it so much.  I've even started applying with a few airlines.  Last week though my DH and I flew to Miami for a doctor visit.  We were there for 3 days.  We drove for hours, took several flights and slept in a hotel.  By the end of the third day I was whipped.  Every muscle in my body ached, my brain felt overstimulated, I felt irritable and completely drained.  As we were descending back into Phoenix it suddenly hit me that this was probably no longer going to be an option for me.  I was mad and sad all at the same time.  The hardest part is my DH, though wonderful, didn't get that I can't do anything I put my mind to as he seems to think.  It isn't my mind that is the problem- it is my body.  Why does everyone just think it's "mind over matter"?  Don't they think if that were true we would want to feel better?  That we'd want to not be in pain, exhausted and walking around in a brain fog every day?  Who the hell would choose this for themselves?  Sorry.......I'm a little cranky this morning and tired of those who love me not understanding how hard this all is.  Thanks for letting me rant.

Paula, I laugh a lot too and people can't understand it when they find out how much I have wrong with my body. I figure you either laugh or you cry. I chose laughter.

Kate, I was wondering when you were going to test your physical capabilities! I am SO sad that your body has let you down. I couldn't possibly do the jaunt that you just described with my FM. My body would shut down. I've gone on a plane with just my cane and come off in a wheelchair.....sigh. Way to much stimulation!!!

yup, I had so many challenges with chronic pain before the breast cancer, and the chemo brought this to a whole new level.

I cannot function without neurontin now....if I miss it, get this electrical buzzing feeling. I was just talking to my sister about this (she has similar symptoms.) I was sitting down in Rite Aid in one of their plastic chairs (yes too pooped and had to rest,) and I was leaning my leg against the plastic chair leg next to me. I was wondering what was happening as had I noticed what felt like an electrical current running down the chair's leg. then I realized it was me. It felt like my leg was resting against a fan on low.

can anyone else relate? and it will also come in waves, small currents that make me feel like I am shaking from the shoulders down through my legs. I remember when I was a little girl and running around at my swimming meets that my legs would both ache terribly at the end of the day. The back pain started in earnest in high school.

and yes, the pelvic pain, pudendal nerve pain and lower back pain are just fantastic.

oh, for a cure.

traci

Barb,

I was buzzing today as well. I wish there were some researchers interested in studying this weird symptom...I think I'll look at NIH to see if there are any studies...under fibro or musculoskeletal or autoimmune disorders, or all three.

Hang in there all.

3jays,

I am going to assume you had chemo as well? I havn't been able to get back to my pre-chemo baseline (which wasn't very good either.) Years ago, I had tried Lyrica, and granted my MD probably started me on a dose that was too high, and I was dizzy spinning for 24 hours so I said never again! I havn't had the guts to try it again at a lower dose. So the neurontin for me has been really great. My pain MD started it before the chemo to try and preempt the side effect of neuropathy from the chemo. I did get neuropathy, worse in my feet than in my hands, but neurontin has been very helpful to me. It's inexpensive compared to Lyrica too. Because I am sensitive, and it makes me sleepy, I never made it past 3 300 mg. capsules at night, maybe one capsule during the day added on, on the weekends. I also feel like it mitigates the pain.There are some people that take divided doses throughout the day, so my dose is really the lowest that will provided symptom relief.

Just go nice and slow...have your MD titrate you slowly, and you may begin to feel some better. I wish you the best, would you let us know?

Traci

sunangel- Thanks!!!!  It always helps to know someone out there "gets it".  I admire you working full time.  I think I've realized that a desk job will probably be a better fit for me.

I haven't had the buzzing that everyone is describing.  Very interesting!  I just get the numbness in the feet mostly.  My biggest issue besides pain is the fatigue that just hits out of nowhere.  I'll be out shopping and then....WAM....I'm instantly so tired I feel like I just need to lay down somewhere.  It's all I can do to finish, get to my car and get home.  I think that's why I don't try to make too many plans or have too many appointments.  I just never know when it is going to hit. 

I keep forgetting to check this thread from time to time.  Barbe, you always have good info. on this.  Hope you are feeling a bit better today.

When I try to describe the feeling in my hands & feet, I have to tell docs, "It's not really a tingle, more like a vibration."  That does not really hurt, but it feels unpleasant.  Unfortunately, I have the pain also.

3jays, I'm on Gabapentin (that's the generic of your Neurontin) but am only in my third week.  So far, it is not helping.  Everyone is different.  I do strive to be pain free and I am nowhere near giving up trying to achieve that goal.  Wish me luck!

I'm curious if anyone has really tight muscles as well? I was wondering yoga may help? There is also something called restorative yoga, but who has the $ to try? That's the next point of all of this...money for treatments outside of conventional medicine.

I am going to start a regular gentle stretch program and see if it helps. comcast xfinity for yoga

3jays, I sincerely hope you have some luck with the neurontin.

Kate, yes, the fatigue. I have friends who do not understand why I have to negotiate my energy each day, and if I work, then I must come home and rest before doing any more errancs. More like fall face down on couch.

elimar,

so another person who understands the vibration, electrical current issue. I wish we could use this to tap into the universal energy source to win next weeks Powerball.

traci