Winter...some thoughts

A week ago Monday it was 82 deg here in Norman.  Beautiful sun shiny day and my fibro and other health issues were on hold! It was nice to go outside and sit with a cup of coffee and relax.  We had had a fairly cold night a couple days before and were touched by a little frost so the garden plants were looking a bit worse for wear but it was still a beautiful day! 

That was it for beautiful 80 degree days for this year.  That night a system moved in that dropped temperatures down into the 20+ range at night and it doesn't get much over freezing during the day.  I kept on keeping on rushing around with my daughter and husband during the week and I started noticing I wasn't sleeping well again, hurt all over and sat with my muscles all tensed up all the time.  I finally had to call uncle on Friday and told everyone I was staying home in the warm as much as I could.  It was just too damn cold for me to be out and about and I couldn't seem to get warm no matter how many layers of clothes I put on and when I did it was almost a feverish warm.  I put the flannel sheets on the bed along with the electric blanket and comforter! I found my tennis shoes and socks and started wearing turtle necks and sweat shirts.  Anything to get warm. 

And it just keeps getting better and better!  It snowed Sunday...about 1-1 1/2" and was in the low teens temperature wise.  I am 62 years old and I can remember running around in shorts at Christmas but I can't remember ever having snow in November or it being so cold.  People laugh at global weather changes and I am sure my husband would say this isn't part of it but just one of the 100 year things but...I am miserable none the less. 

So you are asking me what does this have to do with a Fibromyalgia CFS blog.  Well dear reader it is simple.  Weather affects everything I am and do now days.  I keep trying to get Chuck to get together a research group to go for a grant from the Howard Hughes Medical Foundation and research why weather affects me and people like me.  There has been some done but it is so subjective...(ya think so)!  Weather affects everyone so differently that there is no control group that they can base it on.  What I think is miserable hot or cold is different to you.  It is a problem with no solution I can see so I guess what we have to do is take care of what is the issue. 

Right now my issue is sitting here typing on the computer my hands and feet are like icicles!  Check it out!  My computer tells me it is 54 degrees outside right now, the thermostat just outside the door to my room says the heat is running and the thermometer says it is 70 degrees but I am cold!  I have on sweat pants, sweatshirt, heavy socks and a lap blanket on but I am cold!  My fingers and toes are the culprit I am sure!  My fingers and toes hurt and feel swollen but they aren't and my ears and nose are just about as bad.   If I get those four body parts warm then I feel warm all over.  What's up with this?  It is so frustrating and in turn it makes me run to the computer and start surfing the web to investigate what might be causing it!  I have told my doctor and he is clueless but is sympathetic like other health care providers you go to see (like in the ER)with a diagnosis of Fibro or ME/CFS you don't get a great response from them because they are convinced you are just there seeking pain meds or worse yet that you are crazy!

I read an article and posted it a few months ago on the Solve ME/CFS Initiative (used to be called the CFIDS Association) website about some research being done showing that the autonomic nervous system in people with CFS/ME and Fibromyalgia is compromised and we are unable to maintain body system regulation at normal levels.   The autonomic nervous system (ANS) controls just about all our body systems automatically and when that goes awry there are problems.   Another article that the Solve ME/FMS reported on was some research done on orthostatic intolerance (OI) done by big league university researchers showing that people with Fibromyalgia and ME/CFS have a problem with ANS control.  There is no miracle drug to cure the disorder nor is there a specific treatment for OI...we just treat the symptoms and OI can ANS dysfunction can affect every system in your body. 

My family have several members plagued with a disorder called Raynaud's Syndrome.  About.com's health page has an interesting article about Raynaud's syndrome/phenomenon and how it is an overlapping disorder in people with Fibromyalgia and CFS.  "Raynaud's syndrome is a condition in which the blood vessels constrict, causing inadequate blood flow. That leads to frequent cold in your extremities and makes it hard to warm them up. The most commonly affected body parts are the fingers and toes. But your lips, nose, ear lobes, knees and nipples may also be involved."  Wonder if Raynaud's is an ANS dysfunction?  According to several sources it is highly likely that is the issue. hmmm....I think I may be getting to a solution to what ails me!  Once again medications don't do a lot for this disorder and symptom treatment seems to be the solution! 

I keep looking up and reading about different things and it worries me sometimes that I might be assimilating issues like the Borg out of Star Trek!  If it goes with Fibromyalgia and CFS then I seem to have it in one form or another.  I hate it when I doubt myself cause it seems I am the only one who really believes that what is wrong with me is a real problem.  When my memory is so faulty and I am confused as to what is REALLY going on with me!  What do you do to 'keep the faith'?  It's hard when the disorder has no lab or radiological tests to prove what you are feeling and going through is anything more then just in your head.