LIVING WITH FIBROMYALGIA

Introduction: What is Fibromyalgia? A little background on me!

Hi! My name is Lisa but I go by my stage name on Yahoo! groups. I'm known here and elsewhere as Vocalvibes. I am 28 years old and I suffer from Fibromyalgia, TMJ dysfunction, Carpal Tunnel Syndrome in both hands, Raynaud's phenomenon, Depression, Irritable Bowel Syndrome and chronic sinusitis. I have been in constant pain that all started for me in October of 1999.

I was a liquor manager at a grocery chain in Tucson, Arizona. I had hurt my back and neck lifting a 24 case of beer. My job was to basically stock shelving and then do all the managerial stuff. Basically lots and lots of lifting cases of wine and individual bottles.

The first time that I was injured workman's comp paid for the medical and I was shoved back into my position before I really was ready to physically be able to come back. I dealt with the pain for awhile because I knew that with my full-time school schedule this was the job that I needed to keep because of the benefits and all. I would normally work from around 3am-10am and then go to class after that. For a bit I was making my own schedule so things were good.

Well on June 23, 2000 I got so bad that I could not even bend over anymore. The management was getting me to do 8 hours of work in 4 hours. So after I got done stocking the coolers I went into the general merchandise section and started the displays of batteries. The manager at that time gave me a list of things to do and I explained that I could not lift because I was in so much pain... I was crying. I had woken up that day with so much pain that I took some Ibuprofen and hoped that would help. So at that time I was married and called my husband on my lunch hour and told him that he had to come and get me because I could not continue working.

Stupid me when I was asked if it was work-related I said that I did not know because after my shift the day before I went home and went straight to bed and when I woke up I was in extreme pain.

Before I did go through therapy and all but this time I had to do everything on my own. June 23rd of 2000 was in fact the last day that I worked for this grocery store. I was staying at a friends house... we had rented a room in a friends house for the summer since she went back to Phoenix for summer and would not be back until school started again. So we were in Tucson, Arizona at the time.

I went to the emergency room and was told to go to the work's doctors which jerked me around because they never had asked me for a drug test and so it was my fault that they did not give me one according to my job.

My PCP was a big Pain in my butt to say the least. He kept trying to make it seem that Naproxen was going to help me. I explained that my work would not let me come back until I was fully better. Even though I explained that I had to get the doctors to sign things and they refused. I was not getting any better.

Finally after seeing 3 different doctors in the practice who were not willing to do anything I went to Tucson Medical Center to get help. I was given medication and referred to a joint therapy place. It was a chiropractor, a medical doctor and psychiatrist and physical therapy.

I have to say that they did whatever they could for me. When it was time to go through physical therapy they realized that it was not helping but rather, hurting me! Once the six months passed that I was there I was told about Fibromyalgia. I had no clue what that meant. I was told that maybe the universe was telling me that I could not do the job that I had. I had too many restrictions to return back to the job that got me this way. I was also told about the Fibro Bible and to read up on it so that I would know what to expect.

I guess to be fair I should tell you that I have been mentally and physically abused as a child. I have been in a few car accidents and had pain but not to this extreme extent before. I have basically no family because they all don't want me to talk about this problem with the fibro. The IBS I had been diagnosed in 1997 in community college when I realized that I had too many times where I was in the bathroom and well you know the story about that.

I used to be very active in dance and softball and volleyball...but towards the 1990's my ankles would turn inwards and made it really hard to do much of anything. I have fallen on my ankles a few times and been in therapy for that. I am 5'4 and 250 lbs give or take.

I was pretty sure that the constant motion from work caused the Fibromyalgia to start up. I went through the whole workman's comp thing and lost. Luckily I was part of the United Food and Commercial Workers Union and they paid me $150 every week for 6 months. Once that was up the company said that I did not give them proof that I was still on medical leave so they fired me in January of 2001.

Well the therapy place was doing everything for me. Chiropractics, TENS unit, trigger point injections, cortizone blocks and therapy all with no measurable results. Finally they gave up on me and that was when I was referred to a specialist.

I have to say that the specialist that I was going to was a Godsend. They were so wonderful and understood that I was taking way too much on in my life and tried to work with me. They knew that I had to have a job and always were sad to find out that no job could be suitable for me.

I was married at the time but my husband decided to go into the military and so I was kinda left fending for myself. I took a few odd jobs. I was an assistant manager at a shoe store for about a month and a half and then for two months I was an internet service representative. You know the people who find out why you cannot connect to the internet. Then when I moved to New Jersey after my husband abandoned me I was a medical billing encoder for about a month. I could not even do these jobs. That was not very encouraging.

My husband at the time knew about Fibromyalgia because his mother has it. So we became very close and all because of the bond we have with FMS. Unfortunately on the weekend of September 11, 2001 J. (my husband) decided that he did not want to deal with the military anymore or our marriage. He said that he did not want to end up with the same type of marriage as his parents.

Which meant that his mom was dependent on his father for a lot even though she works. She is a social worker and the people in Missouri are very understanding of her illness. He was young and did not want to be tied down.

After I was abandoned I stayed in New Jersey for about three months. I had nowhere to go and so a couple paid for me to stay with them for a bit. Even they could not deal with the pain and all that I was going through. When I mentioned how I needed the narcotics that I got in Arizona I was taken off of them all even though I had tried everything and told the doctor that. So I got no pain meds and was just left hopelessly in so much pain.

To top it all off, my job made it so that I had to take two hours of my to get there by bus and train and this for a 4-hour job five days a week. Since I am an over-achiever and I really needed the money I tried to work more hours and come in whenever I could. The job did not work out because I was having such bad crying spells over the whole marriage ending and pain that I could not deal with anyone else and was treated different because all of the people who worked in the place were African American. Yes, I was the only caucasian person there. I was treated pretty bad and since it was a temp job they decided to let me go.

The people that I was staying with were fed up because I was always in bed and in pain and just not functioning at a good capacity. I tried to explain that by taking my pain medications away I was getting worse and they wanted to make it seem like I was an addict and that they understood why I was being taken off of all the medications. Well for a doctor who is on the good doctor list I want to tell you he was not worth anything to me.

Eventually I was conned into going to my families house in Chandler, Arizona. I was shipped back there and that made me so angry because I have never gotten along with my family. They wanted me to go through being in a mental ward and all and they thought that I was making all of my pain up.

I went to counseling as well as going to a rheumatologist. Thank God for state insurance, since I qualified for it I was getting taken care of for free. My regualar PCP would not give me any medication and told me that Fibromyalgia was a trash basket filled with nonsense and whenever someone could not figure out what you have you were labeled as that. Well I did not believe that for a second and quickly asked for a new referral.

It was almost three months later when I was finally seen. I had gone back to the PCP and asked for medications and was given anti- inflammatories. Um, I did my reading and I asked what the hell she was giving them to me for because Fibro is not inflammatory and she said it was. Then she said that she was not giving me narcotics because she was not allowed to.

I finally got to the rheumatologist and was given 20mg of OxyContin and Hydrocodone ES for pain. I have to tell you that when I told counselors what I was on I might have well been labeled again as an addict. I hated it. I had to beg to get transportation to my appointments and was told that they did not want me to be homebound so they wanted me to walk to the bus stop and I'm sorry but walking a mile left me in so much pain that I refused. They decided since I was on narcotics that they would send a van for me. It took that for them to understand that I was disabled.

Well my family drove me up the wall and called me lazy and thought that by making me feel like crap that I would go out and get a job and all. Then even when I looked I was not doing a good enough job for them.

The counselors knew the crap my family was putting me through and suggested that I leave and go to a shelter. So that is where I was for about a week and a half.

That is all that I can write for now. I am in Indiana currently thanks to another great friend who at once was a fiancee. It's another long story but out here I am getting messed up with medications. I will explain that later. I am also currently waiting for my SSD hearing. I will let you all know more soon. *hugs*

Lisa Waller


 
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