Tuesday, March 29, 2011

My last doctor's visit

I went to visit the disability doctor in Oklahoma City last Thursday. I don't know whether to be glad that part is over or wish I could do it all again. I wasn't having a very good day and even though I thought I had gotten enough sleep etc. I woke up hurting all over my body and had a headache from hell. Worse part of all was that the headache was giving me grief and my memory was horrible. Heather accompanied me to the visit and I had to get her to help me remember surgery dates etc. I guess I need to start writing them down for the days she won't be with me. I asked if she could come back in the exam room with me but he preferred to try and do the visit with just the two of us and I was oh so fearful...without cause it turns out.

I had a visit with Dr. J Burke a Social Security Disability investigator. Dr. Burke was the very epitome of patience with me and if he had a private practice I might even think about going to him as a patient! When I had difficulty with a question he would approach it from a different direction and the answers would come. I failed the physical part of the test cause with the pain and stiff muscles I could barely stand on two feet much less one and forget hopping. I left with some interesting information too cause during the course of the exam he told me he thought that I might even be early stages of Parkinson's Disease. Since my father died of PD in 1989 it is possible I inherited the disorder from him. I you read the signs and symptoms of Parkinson's Disease and those of fibromyalgia/CFS they are so much alike it looks like I have a waiting game to play now to see what develops.

I don't want any of the disorders but if it came to it I think I would prefer the FB/CFS over the PD! Keep checking back. It may be years but I will eventually find out what is wrong with me!

Thursday, March 17, 2011

Doctors visits

Went to see the Social Security Disability psychologist on Tuesday of this week here in Norman. I don't know that it was a necessary visit but it was a hoop that I have to jump through in order to get approved for disability! I think they were looking to see if I was a psychosomatic nut case and not really disabled. They sent me to visit with a PhD psychologist that told me all about his many degrees of which psychology wasn't his first. He was actually a PhD in Physics and worked for NASA before retiring and turning to psychology and getting a PhD in that! The guy was smart I will give him that but interpersonal skills were limited! He told me that he never hears the outcome of the cases so not to blame him but that he felt I was justified in filing for the disability. Now does that mean he will recommend they give it to me? I don't know!

Today I went to see a neurologist in Oklahoma City to see if he can figure out what is going on with my balance and gait. After sitting a waiting for a period of time the doctor himself showed me back to his office and did a minimal exam, told me that he did all of his office work himself and didn't believe in office nurses. Cheap huh! Three hours later I left the building wondering why I had even bothered to go to see him. His diagnosis was that I have some medical issue not neurological issue and that he wouldn't be able to do anything to help me! He told me that he would recommend that Dr. Merrill send me on to see a Rheumatologist because of the pain and balance issues. I did get some good news...I don't need back surgery like they told me 2 years ago cause my leg and foot pain couldn't be caused by my congenital defect and I don't have Parkinson's, brain cancer/tumor, organic brain deterioration, or MS! Nice!

Hummm.... I seem to be up shits creek this week batting 0-2 with the doctors I was dealt. I still hurt! I am still ignorant of what is causing all my problems. I guess I will have to give in and go along with the diagnosis of fibromyalgia, chronic fatigue syndrome, restless leg, IBS etc. cause nothing seems to be wrong with me according to the lab tests, xrays, MRI, and cat scans. This is so frustrating to feel so bad and not know what is wrong! I am a black and white type of girl and I am not fitting into any box I know how to draw!

Tuesday, March 15, 2011

CFS and Fibro

I have had CFS for years and years and intermittently had the pain from Fibro. Now they are around all the time. I crash more frequently now then in the past and I have been down now since last June or July. It is like a horrible bad flu that has been going on for a long, long long time. I keep getting told the same crap and I am so tired of it. I think my doctor is great and he is really supportive but...

I just listened to a seminar talk from Stanford researcher that just tied in to my issues and I thought I would share this with you. "Dr. Jose Montoya of Stanford University has recently launched the Stanford Chronic Fatigue Initiative. In this presentation recorded at Stanford Hospital, he discusses CFS and his research interest in infections and CFS." Give it a view and let me know what you think. The URL is http://www.youtube.com/solvecfs#p/f/0/Riybtt6SChU

Thursday, March 10, 2011

Medication interaction

In an earlier blog post I reported about going to Walgreen's to pick up my new pain medication and the pharmacist refusing to fill it for me due to a "possible" drug interaction between the drug Savella and the new drug Tramadol/Ultram! The pharmacist said they would call Dr. Merrill and alert him to the fact and ask him what he would like to RX instead of the Tramadol/Ultram. Well folks that was on Friday night and today they called and told me that my prescription was ready to be picked up (Glad I still had some pills here or I would have been in a world of hurt literally!) I went over to get it and stood in line for just about 45 minutes and found out that they had recommended that he increase the Lortab dosage to control my pain! Lortab helps some but doesn't do a whole lot for the neural pain. It helps the arthritic and the headaches but not the achey all over pain I have most days. It is a Schedule 2 narcotic that is highly sought after by drug addicts and and it very addictive. Being a nurse I am concerned with the possibility of becoming tolerant to the medication and having to increase the dosage and then becoming addicted. That's why after reading online about the Tramadol/Ultram being used more and more for neural pain effectively I wanted to try it. Oh well, I don't want to get off the Savella cause it seems to be doing me more good then the Lyrica and Nortrylline did.

Here is a link to an article about serotonin syndrome on Wikipedia that I found interesting. http://en.wikipedia.org/wiki/Serotonin_syndrome
I am glad that the pharmacist caught this. I sure didn't want it.

Sunday, March 6, 2011

Today's Status report

I have not felt good for about 4 days and today I really feel like warmed over dog poo! I have had that flu that has been going around for about 10 days and truthfully if it wasn't for the cough and fever the muscle aches and pains wouldn't seem much different the the ones I put up with on a daily basis.

This afternoon I woke up around 4pm-ish and almost fell getting out of bed. I had slept fitfully off and on almost 12 hours today. I hurt all over more than anywhere else and my legs felt like they were freezing and tingly but when I rubbed them they felt warm. I had cramps all over in my lower extremities, my back from cervical to lumbar had spots that hurt like hell and I wanted to detach my left hip so I didn't have to feel it anymore. My right should and arm hurt like I had carpel tunnel or something and then to top it all off my brain has been so foggy even after 3 cups of coffee I still feel drugged or drunk!

I know all of the above is symptoms of the fibromyalgia but this day it seems worse than ever before. I am really tired of feeling bad and hurting all the time. I have taken on some positive lifestyle changes ie diet and exercise but really can't notice a change. I bought the book T'ai Chi for Dummies, Gentle Yoga the 15 minute workout, and have watched a couple videos on Netflix that I am hoping will help. I am afraid to leave home and go for a walk cause what if I have one of those episodes and I can't make it home? I would have my phone and be able to call for help but...

I had this brain storm a couple months ago that maybe my medications might be contributing to the problems with my health. I ran out of synthyroid, found some in the cabinet and weaned myself off of what I had left, I weaned my self off of omperozole and estrogen so now all I take is the Savella, Requip, Ibuprofen, and the occasional Lortab and Tums antacid. Dr. Merrill was surprised I had done this but like I told him I had been on the synthyroid for 48 years and I didn't know whether I even needed it cause there were no tests 48 years ago to say I needed it just some old doctors guess and by golly. I had lab this past month and the thyroid levels were no different then when I had the last test while on it. I guess I will go a few months and have it tested again. I went to Walgreen's to pick up my Lortab and Tramadol (new pain Rx) last night and the pharmacist refused to give it to me saying that the tramadol would cause problems with Serotonin levels and interact with the Savella so that wasn't a good idea. One more thing.

I go to see the psychologist Fuchs, for the social security disability people, on the 16 March. I already know what he is going to say. I am depressed. I told them that! Why wouldn't I be depressed? I am not a going to take a gun to my brain and end it all type of depressed I am just down because of all this crap that is going on. I think that anyone suffering with chronic pain or any other chronic ailment would be depressed and if they weren't I would seriously look into what was wrong with them!!

Enough whining. I will persevere! I am made of strong stock and will keep on keeping on. My grandmother used to say God didn't give you more than you can handle...I don't know about that! I don't believe in it!