[srdaley]

Hi All...
I guess I should start off by saying the reason I'm here is because I'm looking for a support group. This "community" seemed the best for now since my pain issues are not just of one type. I'm 60 yrs young, wife, mother, grandma, friend, and support to anyone I can be of help to. I've learned through the past 14 yrs of chronic pain that the support you give out comes back to me in bussels. I live in Central California just outside of Yosemite in the beautiful foothills. Living amongst the thick trees, fresh air, deer who visit each day along with the hummingbirds, squirrels, and occasional skunks, it is always easy to find things to be grateful for. For the first few years of my "pain path" I spent a lot of time in "self pity." One day I woke up and discovered it was helping my pain in the least. I'm sharing these things with the hope that someone may get something out of my post.

In 1994 I had been working for a Dr. in Family Practice for a number of years. Fibromyalgia was a fairly new diagnosis at the time, and as more people streamed in, I wondered why all of a sudden everyone seemed to have FMS. I'm still not sure except that they were so fatigued and in so much pain...at the same time the Dr.s were just starting (up here in the mountains) to receive information about FMS. Probably a half a dozen women came in with these points of tenderness which is about the only way FMS can be dx'd. After having a hysterectomy I found myself getting tired much easier. I thought it was just the surgery, but I was to find out that was only the tip of the iceberg. Within 6 months of the surgery I was so tired when I woke in the morning that I wasn't able to do my exercises. Exercising for me was important if I wanted to be Suze Perky for the Dr., staff, and our wonderful patients. One of our dear patients that had FMS and was probably the most vocal person in our county about the "new syndrome" came in for a visit. It was easy to tell when I wasn't up to snuff because I am by nature, very outgoing. We had the busiest practice in the county and having to stay until 6:30pm was not unusual.(The Dr. had trouble keeping to the schedule, which is why all the patients loved him so). My dear friend said I didn't look well, ask me a few questions which I was glad to answer. She suggested I read up on FMS and see if I had the symptoms that went with it. I told her there was NO way I could have FMS, I had two sons left in High School, and patients that needed my TLC.(What a codependent..) My second son graduated and we had successfully raised two of my three sons, two down, one to go. By the time our third was in his senior year of HS, the symptoms of FMS were becoming all to evident. The problem, denial. Each morning I'd crawl out of bed, get ready, and be to the office by 7:30 a.m. I was sleeping during my lunch hours in the pediatrics room. I started dropping weight because I couldn't bring myself to eat. This was part of FMS I didn't mind..except..I was getting weaker. I was running into doorways due to lack of balance. Like everything else I would joke about it not wanting anyone to be concerned. The wonderful doc I worked for was in denial also, we both made a good part of an efficient office team. I finally decided I needed to be sent to see a rheumatologist. At that time we didn't "grow" any of those kinds of doc's up here, so I was recommended to one in the valley, God Bless that man! I was so exhausted and in so much pain by now that my husband had to pick me up and take me there, an hour + drive. After the Dr. talked to me, poked around a bit With my husband for support, the Dr. didn't hesitate to say what he believed I had. I broke down in sobs, I knew what this meant at least for a time. The rheumatologist did other bloodwork to rule out other things, but I ended up with FMS and Chronic Fatigue. I wanted to try and continue to work, my husband was supportive in whatever I needed to do. My 3rd son was graduating in May, by August I would be crawling to the bathroom because I couldn't walk due to the pain in my legs. The plan was to rest for a week or two, then attempt to go back to work. I did nothing but sleep for the next two weeks I had gotten so run down. The two weeks went into 6 weeks of going on State Disability so I'd at least have a paycheck coming in. I wanted so much to go back to work. I ended up accepting the idea that wasn't going to be a choice at that point. I did some paperwork for Social Security Disability, and that was 10 yrs ago. I felt blessed that it took less than 6 months to receive it, thanks to the Dr.s wonderful notes. I decided that at the very least I could call the patients that had FMS, invite them to my home to see if we could become a support to one another. Between holidays and summer vacation, we put the support group on hold for a few months. As it ended up someone else took it over whem I wasn't able to (and did a fine job). The biggest problem for me was getting my medications adjusted. I was getting up during the night, two or three times, then sleeping half the day away. It only took about a year or two to get all of those straight, then my Dr. retired Dr.s in our town in that period of time did not really believe that FMS was physical, but more psychological. My experience has been it's a combination of the two. Stress always made it worse. I couldn't even stand up long enough to cook dinner, fortunately, my husband is a better cook than I am. All sorts of things took place during the past ten years, but I've already begun the novel. In Dec. of 2005 I was in the "lotus position" with my back against the end of the bed. My laptop was placed squarely on my lap/legs. My husband came hunting for me, and found that I had fallen asleep. The problem was the pain was so excruciating in my left leg and foot I screamed (a first for me ...for pain that is) He gave me a pillow, blanket, and I assured him and myself that all would be well in the morning. NOT! I ended up with what they call "dragged foot." My left foot did not work. I saw the neurologist, he dx'd the dragged foot, and within a week, the dragged foot was gone and the most awful pain in my foot began. I couldn't believe yet one more lesson was about to be learned. My Dr. said there was nothing that could be done. They now labeled it neuropathy (no diabetes...), I had crushed the nerves in my foot and boy did they let me know it. A year or so after it happened we had a new surgeon move into our area. He ran a number of tests but felt relatively sure my foot could be repaired as good as new. NOT! In his defense, he did say he had never worked on anyone who had fallen asleep in the "lotus position." This Dr. looks like he's about 14 yrs old...going on 12. This is a guy whose going to cut my foot open? He said he was very good at what he did, and so far, hadn't had any neuropathic surgeries that weren't successful. In retrospect, I'm wondering if I was one of his first. He said there was a 95% chance I would fully recover, never to have the neuropathic pain again. NOT! I went through surgery with flying colors. Everything had gone so well, and I knew it was going to be wonderful to walk like a normal person again. I went in to his office for my post surgery visit. It wasn't any better. He reassured me sometimes it took a little longer. It's been two years since the surgery and I'm still "hurtin' for certain!" Now, we're not only dealing with FMS, chronic fatigue, but crushed nerves that weren't able to be repaired.(He was sure at the time of the surgery he had fixed the problem) I had more tests run, and after 6 weeks he assured me that I was just taking a little longer than normal. 6 weeks went into 6 months, then 16 months, and I still live with the clause in the surgery contract that said in teeny weeny print...never brought to my attention or my husbands, that there was a 5% chance due to the severity of my injury that it may not work. The thing that I felt worst about was that he couldn't just be honest from the beginning..I do believe there was a little ego problem there...new plastic surgeon...this guy was on a pedestal. Had he told me that I only had a small % of reversing it, I still would have tried. The depression came from not being told the truth from the get-go. After a year, the worst part of the whole thing was the depression. The one thing that helped my FMS the most was EXERCISE...it hurt like heck when I started, but the results were so great I continued on. Little did I realize that the exercise had also kept the "depression beast" away. It got pretty bad. Let's just say I could understand someone not wanting to go on. I hadn't been out of the county in years, thank heaven for a wonderful friend who kept my head above water. I went to see a MFCC(Marriage and Family Counselor) who did a wonderful job in getting me back on track again, God Bless her! I also figured out that it wasn't going to hurt anymore to do my walking aerobics in my room, with my walker for support, and my bed close by in case I lost my balance. Things started looking up again. I just had to remember that when I felt so depressed I had to move, exercise, even if I didn't want to. We're not done. Four months ago I made a stupid move and ended up falling from about four feet off the floor, on my back, hitting my head on the outside of our closest. I was so stunned, and a bit afraid to move. I laid there for a few minutes, slowly moving each part of my body...Things "seemed" to be O.K. The next thing I know it's the following day, and I'm in the ER with the Dr.s trying to bring me out of a coma. My husband had tried to wake me up to no avail, so he called an ambulance. They couldn't wake me up, so off to the ER I went. They must have been somewhat concerned since they called my son and his wife in Utah, and they were on their way. My other two biological sons were standing with my husband in the ER...all I knew was that I hurt more than I had ever hurt in my life...a 10+over the top! In another post, if anyone is interested, I'll fill you in on how dangerous medications can be, especially if you take more than you should, but you don't know you're doing it. Later that morning, bruises everywhere, it was like Christmas or Mother's Day in October. There everyone was, my 3 sons, 2 stepsons, and 3 of my 8 grandchildren, oh...and I can't forget my husband. The next few weeks would be the most challenging of my life. The Dr. found some problems when I fell and hit my kidneys, so lucky me got to stay in the hospital for 3 days, until everything straightened itself out. There's more to the story, but this is so long I'm not sure I won't get deleted because I'm so "wordy."

If any of you can relate to any of my story, please feel free to become a friend. If you can't relate to any of my story, please feel free to become a friend anyway! As I mentioned in the beginning of this novel, when I give to others, I receive much more in return. I'm sure that's why so many of the 12 Step Programs work so well.

So, for now......thanks for reading this lengthy "Newbie" post.

I hope to meet lots of new friends!

Suze

[Alffe]

Hi Suze and welcome to NeuroTalk. Here is the link to our Fibro forum..http://neurotalk.psychcentral.com/forum12.html

And here is the link to our Chronic Pain Forum....http://neurotalk.psychcentral.com/forum10.html

You'll find this a great place for support and making new friends. I'm glad you've joined us!

[ali12]

Hey,
Welcome to Neurotalk, you will find many caring people here. If you need anything just ask, I will try and help you if I can.
thanks

[AfterMyNap]

Hi, Suze! Welcome to NeuroTalk!

I see that our hoppy Alffe has given you some starting points, so feel free to join in anywhere.

[MelodyL]

Hi there:

You seem like my kind of person. We're the exact same age.

I just put up one of my hobbies up on youtube. I made a jewelry holder.

I got so tired of losing my jewelry.

Take a look and tell me what you think.

Here's the link!!

http://www.youtube.com/watch?v=9sH81HIXxKY