I can really emphasize with everyone here who is suffering. It’s an awful thing to go through constant pain, as well as having to try to describe it to people who just don’t “get it”.
Many of you are probably like me, in that to look at you, there is nothing obvious that jumps out and says you’re in pain – no physical deformity, no cast, no stitches.
My pain story goes back many years. I remember suffering widespread body pain from the age of 15 on – I’m 51 now.
Mostly it was mild for many years, but enough that I knew it wasn’t normal. I ached all the time, but back then, I was living a pretty rough lifestyle (drinking, drugs, hitchhiking around the country, doing crazy things…but that’s another post!) and it just wasn’t at the forefront of my mind.
I finally settled down, had kids, entered and left a couple of relationships, and then met my (now) wonderful husband.
I’ve also had my share of surgeries over my life, including appendix, uterus, then stomach surgery in 2004 for severe gastric reflux disease. In 2007, my body went into overtime with health problems, and I ended up having surgery to remove my L. ovary, gallbladder and R. ovary – all happening within a 6 month time frame.
Talk about body trauma! My surgeon also discovered that I had scar tissue covering my bladder and bowels each time he operated and that I’d probably had endometriosis for years without knowing it. It certainly explains a lot of why I had so much pelvic pain over the years.
Well, I thought that would be end of all the issues, but no…the ongoing pelvic pain persisted, got worse and became worse than the Fibromyalgia and Myofascial pain. In addition to all that, I also have IBS, Painful Bladder Syndrome, Sjogren’s Syndrome and Reynauds Syndrome.
My family doctor is wonderful and has tried many things, but like most of you, it seemed that narcotics were going to be the answer for the longterm fix.
I was referred and accepted into outpatient treatment at the Chronic Pain Centre in my city (I lived in Calgary, AB Canada at the time and am now living in Victoria, BC, Canada) and there, I worked with a team including doctors, physiotherapists, a psychologist, and others.
We tried several type of injections for the trigger points, including Botox, but nothing helped.
I have been on Disability since 2009 as I can’t sit, stand, lift or carry for more than a few minutes at a time…I’m constantly having to move or shift position to prevent my muscles from stiffening or going into spasm.
The doctor who diagnosed my Fibro and Myofascial pain said it’s among the worst he’s ever seen. I’m never pain free, I’m constantly exhausted because I can’t get into the deep restorative sleep….I’m loopy and dizzy from drugs and as much as I keep a positive attitude, I’m frustrated beyond belief that this is what my life has become.
As I mentioned, I’m now living in Victoria, BC and I’ve started seeing a Naturopathic Dr. My diet and nutrition have been shot to hell, and for the last couple of years, all I’ve been able to eat for the most part is yogurt, granola, cheese, crackers and ice cream.
Nothing else had tasted good and I’m extremely sensitive to texture, taste and smell. My body is hypersensitive to many things including the feeling of labels in clothing, loud noise…you name it.
I’ve also developed persistent excessive sweating – I can be in a freezing cold area and have goosebumps all over, but I’ll be sweating from my head, arms and chest. So embarrassing and uncomfortable!!
I attended group classes at the clinic for relaxation, diet, exercise, etc. and it does help to have other ways to focus and cope. It also helps to be with people who “get it”. My husband is a saint, and treats me like a princess, but as wonderful as he is, he can’t feel what I feel.
Sometimes, the best thing I can do is soak in a hot bathtub and try to focus on other things, but nothing ever makes the pain go away. I pray a lot – my faith in Christ is huge, and I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I’ve always been the doer, but now…I need to step back and take care of me. I sincerely sympathize with each of you here, Pamela in Victoria, BC