Is anyone here a "spoonie" or afflicted with things such as fibromyalgia or other conditions that cause chronic pain? I'm going to be seeing a pain management doctor soon, and I'm wondering what to expect.
Those of you who don't know what the "spoon theory" is, here is a link www.butyoudontlooksick.com/category/the-spoon-theory
Also,
My friend Nicole and I have a website calling Healing Lotus. www.healinglotus.us. We are currently in the process of revamping the site. (Piper keeps it up and running for us <3) It's for survivors, tho of things such as sexual abuse/assault, those that have survived things like bullying and basically any form of violence. It will probably also have a forum for us spoonies who deal with these things. I'm going to be heading that up. I feel my PTSD and other issues affect my fibromyalgia tremendously, and want to have a place to discuss these things
with those who have been through them.
Hope to see some of you there!
Please comment here if you are interested!
Comments
I have a condition, if you
I have a condition, if you want to call it that, of angioleiomyomas. It's rare, it's not been studied much, there are really no treatments other than surgery, and they can be very painful. The most common kind are what I have - they are benign vascular muscle tissue tumors that emerge from the pilar erectile muscle (what makes your hair stand on end) - or possibly from the vein that goes from it. They form nodules under the skin, and as they grow, they can be painful on their own, painful when they randomly spasm, or when they are impacted.
Basically, because of the nerves that go to the hair, they're wired straight into the nervous system. I'd just about rather be kicked in the nuts than have one of them hit - the pain fades more quickly. I've had several in _very_ painful locations removed, and two of them were around an inch long, and a half inch in diameter. (Jokes were made about cutting out my testicles)
Do they affect my daily life? Not extremely, but they're always there, and I can feel many of them all the time - I have one on my calf that constantly makes me aware that it exists. They also look strange, as they are red lumps in the skin, and people wonder what's wrong with me.
I'll get a life when it's proven and substantiated to be better than what I'm currently experiencing.
Fibro
My wife suffered with Fibromyalgia for years. For a time, when the disease was at it's worst, she was bedridden, able to get up and walk to the bathroom (12 feet or so) and back to bed. Our primary care doctor, a DO, started her off with the usual treatments, Paxil and other anti-depressants. They moderated the pain somewhat, but turned her into a drooling zombie. She shifted to the Guaifenesin Protocol, developed by Dr. St. Amand in California, USA http://www.fibromyalgiatreatment.com/ She followed the protocol, and with help from a pain specialist, who prescribed methadone to control her pain, after four years, was able to get out of bed on a regular basis and resume her life to about 75% of what she could do before.
Depending on what type of pain you're having, what the doctor might diagnose as the root cause, will determine your treatment regimen.
Regarding PTSD and Fibro, I have no scientific data to back up this claim, but I believe that emotional stress does make Fibro worse. Emotional stress makes most things worse, from depression, to heart problems, to anything else that is a long term, chronic issue.
Spoonie ?
Well, I had never heard of Ms Miserandino's explanation. During my 45 years at work my body was severely punished and I incurred several injuries. I finally stopped working when my Doc said so because, according to him it would be the wheelchair in a few years if I did not.
I was diagnosed with FM in the mid 90's and last year they started talking about MS. So far, as long as my activity level is very moderate, my symptoms have been minimal, and I take the fewest drugs possible instead choosing to tolerate some pain.
I have gotten feeling so well that I thought I could return to work but within a day or two my body vetoed the idea.
Gwen
My daughter suffers from Chronic Fatigue Syndrome
which is closely related or one form of fibromyalgia. Her specialist told her it was caused by stress. When the body is under stress it switches on the sympathetic nervous system which secretes adrenalin for the classic fight or flight scenario. However, the parasympathetic system doesn't cut in when the stress is over so the sympathetic system continues keeping the sufferer on heightened alertness. This means they don't sleep properly and the batteries run down giving rise to the profound fatigue they suffer, it supposedly rights itself given time. So far it hasn't for my daughter. It happens more in two groups of people - the armed services and teachers. She used to be a teacher.
I've seen articles in the press that diet can help fibro as well, dunno how true it is, but I suspect lots of rest and plenty of fresh fruit and veg help most things. Good luck.
Angharad
And that is what makes things so hard...
to diagnose and treat. Chronic Fatigue, Fibro and several other chronic illnesses have such similar symptoms, and no definitive test for any. The doctor may mis-diagnose the problem and put you on treatments that at best do nothing, and at worst makes things worse.
Fibro is just another family member here.
My wife started suffering from this in 2003. Our primary care physician was stumped. I eventually figured out it was fibromyalgia, she agreed, and started a basic protocol - Anti-dep and Lyrica. After a year or so it was still getting worse. so off to a specialist. He happened to be one of the worst things we could have done. (NOTE: This is because this particular doctor is a nutjob.) He wanted to try guaifenesin She couldn't handle the pain and that course was abandoned. Other "specialists" were neurologists who did not believe fibro was anything more than a mental problem or depression. We even ended up at a nephrologist because one "specialist" was positive these things were kidney related. She's been on Lyrica, Cymbalta and hydrocodone for nearly a decade. Some days are good but she tends to overexert and pays for it the following 2-5 days. She looked into the guaifenesin protocol again just a few months ago only to find out it has been abandoned as an effective treatment.
That said, what to expect? I would figure there would be something like Lyrica or Gabapentin to quiet the nerves. Possibly an SSI to balance serotonin, as many doctors believe serotonin levels can directly affect fibro pain. They'll tell you movement is key, so exercise. You will most likely feel like it's finals week again as you fill out forms and questionnaires. Be totally honest. Humans tend to want to downplay their pain. Don't. Think beforehand when it hurts the most, how it affects your life, specifically what you cannot do or do as you used to. The more information you take with you, about you, the smoother the process will be.
Good luck. I hope you find someone that helps!
Doctors tend to ask how much
Doctors tend to ask how much things hurt, and when asked for a scale, say "1 to 10," without giving an actual scale.
It's usually where 1 is a
It's usually where 1 is a paper cut or small bruise, and 10 is 'the worst pain you've ever experienced'. They don't know what kind of 'worst pain' you've had. If you say '10', they assume that you've never experienced pain that excruciating before.
They don't know how you feel, and everyone feels things differently. They have to do the best they can.
I'll get a life when it's proven and substantiated to be better than what I'm currently experiencing.
I am. I have had worsening
I am. I have had worsening sensory hypersensitivity for the past ... I think almost three years now ... unrelenting headaches, and unrelenting pain. I have had a bunch of tests for it. I tried gabapentin, on the neurologist's recommendation, but had worse trouble seeing and worse headaches.
I am autistic, and have had significant sensory differences all my life. I don't know how all the details, but I am figuring out that what I see and hear is often not the same as what many other people see or hear. Anyway, flashing/strobing/certain flourescent lights were always very intense, often painful, and now they're turned up so they're always very painful, sometimes incapacitating. And the same for certain sounds, I don't know how to describe them, but everything's turned up so the beeps are always very painful, sometimes incapacitating, and even with multiple layers of ear protection, backup beepers force me to curl up and scream in agony.
I also have constant headaches, these seem to be tension type with the occasional migraine layered on top.
I also have bilateral arm pain. I have coordination problems, and can only type with my right hand, s don't know what's causing so much trouble with my left. It is hard to find ergonomic advice, since most is aimed for people who don't have these coordination problems, most things are built for people who are much taller than me, etc.
I also have the usual mix of allergies and sensitivities. I am allergic to perfume, unable to absorb fructose, etc.
I am also a survivor, but not ready to talk about that right here.