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AM I GOING TO GET WORSE???



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03/25/2008 11:37
takeitaway
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Yes I was pretty much "normal" (ha ha) and then woke up with a headache that got steadily worse and stayed around for months......then all the other delightful symptoms started one by one until I thought I must be a nut! I was not even stressed out at the time and had no history of migraine headaches at all. I had a friend at Hopkins who ended up admitting me to run tests. Everything came back normal although they noted a peripheral neuopathy in my feet. The team at Hopkins concluded that I had a virus attacking my nervous system and told me that it would eventually go away. It did not go away..........instead it took hold of my life and robbed me of the last year. I think I spent most of the last year either on painkillers or in bed.

Becca

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03/25/2008 11:49
ALCSS2008
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That was me. Normal? or what is normal? Worked an 8 hour shift.

Minor car accident

Whiplash injury

neck continued to hurt

headaches started

developed tmj, Trigeminal neuralgial,occipital neualgia

over the next few months into the next yr dev multiple

sysmptoms that were then dx as fibro

Why me?

No one has the answer to that. I had never

had more than a cold or a sore throat.

The week before the accident-I worked 61hrs

as a nurse in a very stressful job.

Sandi

ccc
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03/25/2008 12:28
takeitaway
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I have been reading the theories of Dr. Teitelbaum and I think I agree with his position on FM. He believes it is a dysfunction of the hypothalmus. The dysfn can be caused by multiple triggers...virus, hormone, stress, injury, and so on. The dysfn of the hypothalmus sets in motion a cascade of symptoms that feed on one another and upset many other balances within the body. His treatment seems to be directed at the whole body and the interaction between the different systems that are out of wack due to the origional insult to the hypothalmus. It makes a lot of sense to me............Becca

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03/25/2008 13:20
Kaze
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Becca, thats sounds really interesting, does Doc.T have a book out that a person can buy? Kaze
Friends are angels who lift us to our feet when our wings have trouble remembering how to fly.

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03/25/2008 14:04
Matafleur
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FM isn't necessarily progressive like cancer, but it can be aggravated to a larger flare than you had previously by various factors (stress, exerting yourself too much, an injury or a surgery).

As for disability, work as long as you can. It keeps you somewhat active and with purpose however, prepare your medical files as if you were going to apply tomorrow. Make sure all your symptoms are recorded in your records, obtain copies of all your medical records and keep them updated, keep a personal diary of how you feel on a daily basis and the days/hours you miss work because of your symptoms and inform your doctor each and every time you visit them and be sure that, that information is put in your medical records as well. If you don't know if it will be, ask them to do so.

Make sure all your doctors from PCP to Specialist, knows you have been diagnosed with FM and that they record your symptoms as well. There is more that you can and should do to prepare, but I can't remember right now. Sorry.

Disability can take a long time and is a lot of work. If I knew what I know now, things would be easier for me, unfortunately, I have to gather information as if I was just starting and seeing a new doc.

Good luck to you. There are many friendly people here willing to offer what advice they can.


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03/25/2008 14:34
takeitaway
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Yes I think he has two books out. He once had FM which is why he got into this but I don't recall the names of the books. He is currently medical director of the Fibromyalgia and Chronic Fatigue Centers......there are about 10 Centers nationwide..........Becca
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03/25/2008 22:14
meleggs
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I also disagree that fibro is not progressive. I don't know if progressive is the right word but you can go through years of it being at one level and then another medical or emotional issue arises and can set it down a different path- usually the path you don't want to go down.

I suggest you already start to take care of yourself on all levels- physically, spiritually and emotionally- NOW.

I had mild fibro for over 10 year but ended up in a very stressful and emotional place in my life that put me in a flare up so bad I had to quit working.

Long story short I have improve some but never to the point before the flareup. I wasn't taking very good care of myself. I was a work-a-holic and oftened keyed up with anxiety. The end result was a worse condition of fibro.

Like I said- take care of yourself NOW and don't under estimate this condition. I did and I landed on my A@#$$$ big time!



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03/26/2008 09:29
Kaze
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melegg, that is what happened with me, I have had flare ups {Many} in the past 15 years but I hadn't had any for aleast 2 years then I had my daughters wedding last June which we started everything in Jan. to prepare,but I did really good through it all then in July we found out that one of my brothers was dying and only had about 3 months to live,so my husband and I decided to go right away and see him while he was alive then to wait for the funeral, well we spent the day with him and the next morning he was gone. So my oldest brother and I had a funeral to plan...I was there another week.seeing family members I hadn't seen since my fathers funeral when I was 12. Needless to say I was abit stressed but thought I was handling it quite well. We got back home and in August went to a friends 40th birthday and the next day {Bam!} I was done, went to 7 different doctors, couldn't walk for 3 days, extreme pain everywhere, anxeity attacks that landed me in the emergency room twice. Thats not even the half of it...It was the worse episode I had ever had. It has lasted for 7 months. I finally feel like I am pulling out of it. But I am so scared to do anything out of the ordinary, I hate living like this! But I do try to think positivelike "I don't have a illness that is deadly." Thats my big one. I don't no as much about the illness as I should because I focus to much on the symtoms. But I am study more all the time about it. And I hope that by all of us telling our stories someone will figure it out. Sorry I rambled so much, I hadn't told my story to much yet. I think I needed this. Kaze
Friends are angels who lift us to our feet when our wings have trouble remembering how to fly.

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03/26/2008 09:47
meleggs
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Kaze I so feel for you. I too went through a lot of crazy stuff. Lost my mom to cancer when I was 15, took care of my dad who was sick later in life, always had problems controlling my emotions etc. I had a terrible year or two with having a very stressful job, my dad dying other family members ill and all that set off extreme stress. That stress brought on the other symptoms. I was really sick for 9 months. Finally it got better but I never returned to how I felt before the big flare up.

I've mentioned this too many times before but the last job I worked for almost 3 years and then I was starting to flare. I was stressed there and I was planning my wedding. I finally resigned because the employers were not very accomedating even though they knew I had fibro. So- now I've been out of work almost 6 months and I am afraid of going to another stressful job.

My body and mind can't handle stress and every job has stress so what do you do? I know how it is to feel trapped and in fear of it getting worse.

Wish I had some good food for thought but I'm in the same position. I also have fears that my previous employer will give me a poor reference.

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03/26/2008 10:26
Red2
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Kaze, I believe everyone has a story that they need to tell. That is what helps us heal emotionally which in turn will help us physically. I'm so glad that you felt you could share some of your story. I am sorry you have had a horrible 7 months. But, am glad to hear you are pulling back up. After I was so bad a couple years ago, I stopped everything. I spent most of my days in bed anyway, but even when I started feeling a little better, I wouldn't do anything for fear of landing right back in bed. I'm still terribly afraid of doing too much. But have added one thing in at a time very slowly. Then, make myself lie down for a bit even when I feel like I could keep going. I am having a hard time trusting my body. But I guess I have to start somewhere.

I'm like you - I have always tried to remind myself "It's not supposed to kill me!" And, I also realize that God is in charge of that anyhow. If it's my time, there's not much I can do about it. So, I'm trying to find the positive in this (even though this is such a struggle for me). I started drawing again. I had not had time to do that in a long while. I actually wanted to major in art in college, but was talked out of it. Instead I minored in it. My hands get tired, but I work a little at a time. I have enjoyed looking at things on a different level. I never slowed down long enough before. My plate was always full and I stayed wound tight. I would like to think that one day I might be able to work again. But I'm like meleggs - I think every job has some stress level to it, and I CAN'T handle stress.

Anyhow,

I also hope that by all of us telling our stories it will generate enough interest to finally have someone take this seriously and find a cure.

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