HI My name is Gayle, I am 47, and have a whole slew of illnesses, or syndromes, and am very heavily medicated at all times. The biggies are diabetes, fibromyalgia, chronic myafacial pain syndrome, and irritable bowel syndrome. I live in Kingston, Ontario. I try very hard to live the best that I can with my pain, but I do have to miss some things I really wanted to do.

MSintheOC here, I have MS and I live in the OC, that's THE OC in California, I've been forced to retire by the progression of MS, I do alot of support group leadership and advocacy for the disabled community. By the way, my name is Frank!

Hi Gayle...

I have most of what you have plus a couple more which I'm sure you do too! I wouldn't say I was heavily medicated though as where I live they are VERY conservative. If I had somewhere to move, I'd do it!

I'm sorry you have to miss some things due to your pain :(

Kandra

Hi Frank...so, do you run into those "real" housewives" much? <g>

A friend of mine's daughter was recently diagnosed with MS...as was my prior PM. I know how debilitating it can be, so kudos to you for being out there offering support to others!

Kandra,

Because I'm now retired I jokingly refer to myself as a, "Domestic Diva". I may be slow but since my wife is now the primary (sole) breadwinner I think it's only right for me to fix her breakfast and do the laundry (normally a multi-day excerise)! I'm glad she understands the limitations MS has put on my stamina, I don't have to do the rest of the housework.

I know a lot of real housewives in the OC, but I'm not in the trophy wife click and the people I know aren't either!

Hi everyone and hello Frank!

So how is everyone today? Not such a good day from what I'm "hearing" from ya'll.

On these days, as hard as it can be to reach out, we have to do it. I tend to isolate and now I am trying hard not to. Instead of overmedicating, feeling bad and depressed or sleeping, I've been fighting back the pain in my back as if it were an entity separate from myself.

So, I am 51 (OMG) and I live in the Windy City, Chicago, because my oldest son lives here. I'm really a New Yorker though I grew up in Miami. It's ok here except for several months in the winters and several weeks in the summers. Weather has a big effect on me because I have osteoarthritis and rheumatoid arthritis in my spine mostly. The weather here has been bad for like a week so it has been very unpleasant to say the least! My problem significantly intensified about 4-5 years ago. My migraine meds no longer worked. So my doctor tried different things, nothing that really worked well. It worsened to the point that I could no longer work, which was devastating to me. I spent most of the day and night in bed and depression and anxiety were severe. I moved to Chicago to get better medical care and I lived in my son's home. After a while I was able to find a good doctor and a whole network of doctors who actually listen to me and consult with me about my care. We're still on the path towards finding the best pain management for me but I think that it will likely be chiropracty. Everything else, except for prednisone, has actually caused me far worse pain. My doctor is sending me now to try an epidural steroid injection as I now have herniated discs in my lumbar area. This is in addition to what was finally diagnosed a year ago: disc degenerative disease and spinal stenosis in my cervical area. In addition, my doctor told me 2 weeks ago that I have osteoporosis. My spine is like 20 years older than my age. This sucks! With so many nerves inflamed and compressed, I have pain all the time. For me, a good day is like a pain level of 3. In the past 6 months, I've had probably 10 nearly pain free days thanks to prednisone and the cooperation of my body! I have always been really athletic and have that type of body but with boobs. I played tennis all my life, softball, swimming, racquetball, hiking in AZ and fishing <icky>, camping, etc. And then to have this happen was devastating!! I was 47 years old, 5'8", 145lbs in a size 8 which was great for me. Then I began to gain weight-WHY? Everything was changing with my body. Oh, well maybe someone could have mentioned perimenopause to me along the way. So while by spine is falling apart, menopause decides to make it's entrance and I was totally f**ked up. I gained 40 pounds that I couldn't get rid of because of the pain in my head and neck. If I did the slightest exercise I'd be in bed for days.

I have my doctor rx low doses of prednisone to me although she doesn't want to. But she understands that I know all of the risks and that for now this is what I must have. I've been fortunate in that instead of an increased appetite all day, I have little or no appetite and have to make myself eat. What's weird though is that if I go out to eat, I will eat everything on my plate. Then that's my big meal for the day. But I don't eat that way at home.

I hope that chiropracty and/or acupunture and/or steroid epidurals will really kick off a new era of this long venture where I will begin to find relief. I also need to do more research into medications. For some time now I've been on Lyrica, which is now also rx for fibromyalgia. I think that it works but so far my reasearch shows that any dosage over 300mg is not any more effective and it's just more meds for your liver and kidneys to deal with.

When I was in college, many decades ago, well not that many (be kind to oneself!), I was fortunate to have exceptional lab experience in our psych department. One of our labs, which was brand new, was used for doing biofeedback and mental imagery experiments. At my school, psychology was taught as a science so we were intertwined with the bio and physio fields. We were often our own guinea pigs when we couldn't get cash to pay freshman to come and participate <hee hee>. But it turned out to be a really good thing because I learned how to do biofeedback therapy and how to teach it to individuals. When you get good at it, you don't need to be hooked up to a BP, respiration monitors or O2 monitors, etc. I learned that you can combine biofeedback with active meditation by chance and we all started to experiment with it in different ways and for different reasons such as physical vs emotional. Some people could only do passive meditation with the biofeedback but they felt positive results overall. When I worked in a private MH hospital in AZ, I would take small groups of teens and teach them how to do this. Now, these kids were in pretty bad shape to be locked in a mental hospital, right? I would do these techniques with them in the evenings and it actually helped them to sleep better and the kids that were on sleeping medication were able to be taken off of them. They were sleep deprived and no one seemed to see how that affected everything else!@! Are You Kidding Me!! And the kids loved it because, <ahem>, I'm normally pretty creative and funny.

The kids had more energy, and were better focused in their therapy work and it helped them overall.

I still do it at night before I go to sleep sometimes and on BAD days I may do it several times throughout the day. It does relieve the pain but of course you're not sitting or walking or anything else when you do this. You're really kind of sliding over to another plane and you leave the pain behind and let your body heal itself. I need to do this again more at night even if I'm not in a lot of pain to just release the stress of the day so that I'll sleep better.

So I hope that if anyone is inclined to try this med-free technique, try it. I'm sure there are lots of books out there or on-line about it or you can ask me stuff if you already know how to do say meditation or are open to it.

So today I will rate it as a 7. This is not a "pain level" but this was my day with "10" being fantastic. Using my mind a lot today has definitely helped to divert the pain. It was too dangerous for me to go outside today because of the ice, but I'm ok with that. Hopefully tomorrow it will warm up and all melt and flow away.

As I said when I met you all, lets try and help each other. Not just superficially but lets help each other with troubleshooting and doing research as needed and anything else that anyone needs. Kendra's problems with her doctor may be significant. What should she do? My doctors also often disagree which makes me have to do more research and then I make the decision. We must all be EDUCATED CONSUMERS. These doctors work for US. We need to all be empowered when we walk into one of their offices and we must know what is going on with our bodies.

So, that's my laid back rant for the day and I hope that its been helpful in some way. Maybe it would be a good thing to just check in every day and say, "Hey, this is my Life Level today - it's a 6." instead of always focusing on what the pain level is. Maybe we can help each other focus more positively. I know I could use your help!

Wishing you all good thoughts and good health.

I have tried many things over the years, the drug known as Lyrica in the US, I had very severe reactions to it, acupuncture 3 days a week for 2 1/2 years, regular massage, and chiropractic care, even was in a clinical study for Botox on fibro. pain. This is just an example of some of the things I have tried. I think many of us would try anything to get rid of the pain.

I am very lucky with the doctors I have now, but it was a long, long road to get here. I had to switch doctors originally so I could get my sleep disorders looked into. My family physician was always telling me you've been complaining all your life about these things, I finally said so shouldn't you try to do something about it? I found a new physician who helped me to get a sleep study done, and very gradually we built up a team of medical experts to help me learn, and try new treatments. Then my pain doctor got burnout and went back to general medicine, he would no longer take pain patients. So we had to hunt for a new pain specialist, which did not come overnight, one of my other doctors temporarily filled my pain prescriptions until we found someone.

It may take a while for Kandra to find a team to help her, and we should give her our support, because this could be a very difficult task. Often I hear that like me you just have to find that one right doctor who helps you find others, and that those others would all work together as a team like mine. Most doctors will not work as a team in my experience, but it is crucial if you have multiple problems.

Firstly I think she is overdue for a complete physical with bloodwork to check hormone levels etc., and I would also suggest that perhaps she might want to contact her endocrinologist in writing to see if he really does not want to see her again. If he doesn't she should get a referral to a new one from her family physician. However, she has to want to do these things for herself. If she is not ready to do them, or does not want to do them, or will not listen to them, it would do no good to look for new doctors. So perhaps to support Kandra we should first ask her what she wants. Does she want to find new doctors? try new treatments? will she do what they recommend? or does she just want moral support until she is ready?