ER Visit

Well I did something last week that I had promised myself I wouldn't do again!  I went to the Emergency Room at Norman Regional Hospital!  I didn't have a very good experience at the ED the last time I went there.  I checked in with complaints of chest pain and vertigo and was treated to a seat in the waiting room sitting by a man barfing his guts up in a plastic bag!!!  Sorry but the visual is still stuck in my head! 

On Thursday I woke up with a horrible headache, side, back and flank pain, blood in my urine, nausea etc etc etc!  I was miserable to say the least.  I rather suspected that I had a kidney infection but had been putting off calling the doctor and I guess it progressed to the point my body wasn't laying still for it any longer!  I called my doctors office and he was off for the day and his nurse practioner was booked up!  If I needed to be seen immediately I should go to the ER.  So I did with dread in my heart! This time I was shown to the back and the minor care part of the ED and was seen rather quickly by an old nurse friend Pam, and Dr. R. Williams.  I got the fun of an IV, lab work, and a trip to the cat scanner but all in all it turns out that I had a fairly advanced UTI and maybe had passed a kidney stone.  YUK!  Not much fun...actually a real pain!

I think the reason I was so resistant to going to the emergency room is the stigma having my list of diagnoses brings with it.  I was sitting in the chair thinking about what I should tell the intake nurse involving my history of pass illnesses and thought...definitely not Fibro!  Well hell she already had it documented in my past visit history!!!  I hate the stigma that goes with that diagnosis!  Heather tells me to just believe in it myself and quit apologizing for having it...I didn't ask for it it found me!!!  I have been fighting with this crap since 2011 and you would think I would pull up my big girl pants and just live with it but it is difficult.  What crap have I been fighting?  Well lets see...

1. Fibromyalgia
2. Chronic Fatigue
3. Post infectious disease syndrome...I have had lymes disease and RMSF!
4. Irritable Bowel Syndrome(IBS)
5. Restless Leg Syndrome (RLS) 
6. Hypothyroid disease
7. Hypotensive issues
8. Celiac or gluten intolerance
9. Psoriasis
10. Roscea
11. Raynaud's Syndrome
12. Sjogrens's Syndrome
13. mild Rheumatoid Arthritis (RA)
14. face and skin cancer

For years I had been told that I had various other issues but this list is what I function from at this point in my life.  When you look at it the overwhelming issue is autoimmune disorders.  What did I do wrong in my life to be blessed with this crap!  I don't know!  I think that the lymes disease may have been an instigating issue in all this because I didn't have anything by the thyroid issues until then. 

What drugs do I take now?  Very little, as little as I can get by on.  If I don't think they are doing anything for me I have been taking them and trying them out for 4-6 months then weaning off if I don't think there has been any difference.  I am currently on...

1. Synthyroid 0.15mg daily
2. Plaquinal 200mg twice daily
3. Prilosec 40 mg daily
4. Multivitamin (MVI)
5. Fish oil
6. magnesium
7. calcium
8. cranberry capsules
9. Vit C
10. Vit D
11. Occasionally I will have to take a pain pill or muscle relaxer but they don't do much good for me.  I seem to do better with just Ibuprofen or ASA

I have tried a number of other drugs but they just don't work for me and made me feel worse then what I do off of them.  Examples:

1. Requip, ropinerole made me obsessive compulsive and I still had leg cramps taking 4 pills a day.  That Rx was over $800 before insurance brought it down to $65 for me.
2. Lyrica...made me so depressed that I didn't care if I hurt or not I didn't care if I lived or not and at one point wouldn't have prevented something from killing me had I been given a choice...ie moving out of a car's way or being run over.
3. Savella worked in the beginning but then making my heart race and I was feverish all the time.  I had episodes of tachycardia and frequent PVC's so I weaned off it as quick as I could and it still took me almost 6 months to get off of it.  

That's just a few I quit taking after they quit working or I didn't see them doing anything for me.   The cost each month for those 3 drugs was running over $200 and I just could see paying it out for something that wasn't working for me.

I take a MVI cause I have always felt like people should take one to cover for the deficiencies in their diets.  I listened to a tape of the positives of Fish Oil and I take that for that reason.  I don't know that I can tell any difference from it or the MVI but hey I believe in prevention!  The Vit D and Magnesium were Rx for awhile because neither vitamin/mineral was at levels they should have been and I have been told I will have to take them the rest of my life.   The Vit C I take because Linus Pauling showed us back in the 1970's that it has a lot to do with the immune system.  I figure all the research he did taking it wouldn't hurt me and it might actually do some good!

The gist of this post is to tell you I am okay and so are you if you are blessed with any of the above diagnoses.  I apologize regularly to myself and to the patients I cared for in the past that I wish I had paid more attention to them and what they were telling me was the matter with them.  Yes there is a stigma to Fibromyalgia and Chronic Fatigue Syndrome and many other disorders like them.  I wish there was a lab test or x-ray that could point positively at what we have but right now there isn't one.  I am looking at it from the perspective of being an explorer and traveling uncharted paths so others can have an easier trip.  When someone tells me that they don't believe in my disorders I am going to tell them "too bad...I wouldn't wish it on you to show you it exists cause it hurts too bad!"

Gentle hugs dear readers... 

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.