New Member

[cinny111]

Hi my name is Cindy, I suffer from severe chronic depression for over 25 years, then I was diagnosed with Fibromyalgia, a few years after that. There are more days in the week that I would rather just not wake up. In the beginning of this, most doctors thought this was all in my head! I really wish I had someone to vent to, and also help out! This has been a crippling disease for me, as I also have my kinds of arthritis.

Thank you for listening,
Cindy

 

[terbaer]

Cindy, I'm so sorry you have been suffering for so long with severe chronic depression and also have fibro. It sounds like you definitely need someone to connect with who understands. I suffer from severe fatigue, chronic pain, fibro, constant headaches, arthritis, IBS, and colitis. I totally get how frustrating it can be. Don't give up though. If you do not have a doctor who understands or is willing to find help for you, keep looking. I am. I continue to push for new referrals to specific specialists. For me it's the constant headaches, with migraine spikes, and severe fatigue. I have been meeting with a counselor that I truly love. She's helped me to accept what my body is now. I grew up a very active sport-playing person. I played sports until about 5 or 6 years ago. In October, I suffered from a heart-attack. I'm 49 and out of shape, but not significantly overweight. No reason, except for stress. In December, I started having anxiety. Wow, that's scary. I thought I was really going nuts. Long story short, I'm listening to my counselor and taking pro-active steps to change my perspective. I have taken the time to mourn the loss of who I was. I know I need to find part-time employment, although she thinks I should be declared disabled. I'm working with my boss to reduce my hours and am making appointments with some specialists. I am a manager with a staff of three and a work-a-holic boss. One day at a time. Let those things you can't change go. Make positive steps where you can. Continue to stay connected with this forum. It's been a blessing to me.....So, welcome Cindy! I think you will find this forum helpful.....

 

[cinny111]

Cindy, I'm so sorry you have been suffering for so long with severe chronic depression and also have fibro. It sounds like you definitely need someone to connect with who understands. I suffer from severe fatigue, chronic pain, fibro, constant headaches, arthritis, IBS, and colitis. I totally get how frustrating it can be. Don't give up though. If you do not have a doctor who understands or is willing to find help for you, keep looking. I am. I continue to push for new referrals to specific specialists. For me it's the constant headaches, with migraine spikes, and severe fatigue. I have been meeting with a counselor that I truly love. She's helped me to accept what my body is now. I grew up a very active sport-playing person. I played sports until about 5 or 6 years ago. In October, I suffered from a heart-attack. I'm 49 and out of shape, but not significantly overweight. No reason, except for stress. In December, I started having anxiety. Wow, that's scary. I thought I was really going nuts. Long story short, I'm listening to my counselor and taking pro-active steps to change my perspective. I have taken the time to mourn the loss of who I was. I know I need to find part-time employment, although she thinks I should be declared disabled. I'm working with my boss to reduce my hours and am making appointments with some specialists. I am a manager with a staff of three and a work-a-holic boss. One day at a time. Let those things you can't change go. Make positive steps where you can. Continue to stay connected with this forum. It's been a blessing to me.....So, welcome Cindy! I think you will find this forum helpful.....

Hi there friend,
I too suffer from migranes every day, and IBS, and full of osteroarthrities. All my joints are falling apart, the fibro has basically eating away my muscles. I too am slightly over weight, but that was due to crushing my ankle, when I was taking my dogs for a walk in a ravine. I know have a plate in it, and need it removed, as there is cartlidge floating around! I have suffered from severe chronic depression for about 25 years and then soon after fibro. I believe it all started when I was badly reear ended in a car accident and had an extreme case of whip lash. My GP is an idiot, and I do need to find a new GP. I am so very proud of you! I am sorry to hear about your heat attack, I am 48 years old. I wish you lived close! I do not believe you should be working! I finally got a form stating that I am permanently not employable due to my issues! I thank you for your writings and your welcoming me!
90% of the day, I just wish that I would not wake up, I am in severe pain 24/7!

 

[nursewithfibro]

Hello, my name is Tammy and I am in Tennessee. I have dealt with CFS and Fibro symptoms for many years without knowing what they were until last year when I was finally diagnosed. It took practically an act of Congress to get the diagnosis. Someone pointed out to me that I fit the bill when it came to the criteria so I investigated myself and took all of the information to my doctor. We discussed the info and he sent me to an integrative health center where I received my diagnosis. I have been in what they call a 'flare' for over a year. I cant seem to get rid of the stress in my life enough to get over the hump. Little do they know that this is just how it is for me.

I have been on medical leave since April 2013 and dont know when I will be able to get back to work. I worked as long as I could. I was crying uncontrollably and the bf finally noticed something was really wrong (guys dont seem to notice illness unless they are in the medical field) after a couple of weeks of my working and then being in bed from the time I got home until time to leave the next day. I have now had to go on my states Medicare insurance. My doctors that have been treating me for all this time do not accept this insurance so I get to start over. I am out of refills on the meds I was taking, yall know the ones I am sure, the ones you DO NOT STOP COLD TURKEY. well, I had to because I cannot get refills at this time. TennCare is not wanting to accept the prescriptions from docs that do not accept the insurance! I have reverted back quite a few months in just a few days time.

I worked as a RN in an Elementary school and absolutely adored my career. I expected to work until they made me quit lol. I pictured me being the old woman shuffling around the school taking care of the kids. I think my heart broke more over losing my job than from the illness itself!

Well, a little overshared I am sure! I could tell more about myself but time to run!

 

[terbaer]

Oh Cindy, I'm not sure what you could be proud of me for, but thank you. I'm just taking life one day at a time and trying to get further answers. I'm one of those competitive people so figure I have to beat this. Okay, I am actually really trying to accept that I'm unable to do what I've always done in the past....work being one of them.

Tammy, I'm sorry you've been going through a flare for so long. It's been about 4-5 months for me and I can't imagine another year of it. Ugh! There has to be something someone can do for you for the medication. That's ludicrous! That is dangerous to say the least....At what point did you decide you couldn't work? I'm still barely limping along. I go back tomorrow after taking a preplanned 7-day Alaskan cruise. I'm stressing about it as I type. I've had a headache most of the day. We got back yesterday and I've slept almost since we got home. I know I pushed myself, but I also had a lot of relaxing down time, which was nice. If I couldn't get up, we slept in (or I did) until I felt up to doing something. The only really bad day was Friday. We landed in Vancouver Canada. I had a wicked headache and was in a lot of pain. It was the last day and I didn't want to miss out and still wanted to pick up a few things for gifts. So I went into town. It was awful. My headache only got worse. I kept it mostly to myself on how much pain I was in because I knew my husband wanted to explore a little. I slept until 2:00 p.m. and then we took off. No pain killers or muscle relaxers would ease the pain or cut down the headache. I'm glad I went, but was so glad when we got back to the ship.

I don't have to be to work until 8:30 a.m. tomorrow and have my EEG then 3 hour MRI at 12:45 p.m. so it will be a short day. Hopefully I'll get some answers. Really not looking forward to the nerve tests Wednesday and Friday......

Maybe once I get some of those answers I'll know if any of this can be improved. I don't want to be considered disabled, but I can't, can't, can't work full-time. How long will it be this way?.....

 

[nursewithfibro]

It is frustrating! All of it from the beginning, the middle to now. lol I am working with my 'ex-PCP' by email to help me get the information to the pharmacy so I can get what refills I need until the new PCP takes over. His office manager would not let me make an appointment but he has been so kind enough to help with what he can.

Terbaer, I pushed through day to day as long as I could. I was used to working 2 jobs so it dwindled down to one then pretty much everything else went away too. I would come home from work about 345 and nap until about 7ish then try to get up to fix something for dinner and help with homework, laundry...little by little that became tougher and tougher for me to do. I would get up and eat then go straight back to bed until morning. I was able to sit most of the time at work but the lunchtime noise level was so bad that my headaches would have me crying. I had a clinic just off the school cafeteria so I had all K-5th grade just outside the clinic for 2 hours. When the fatigue became so bad that I was having issues with getting around the building to take care of the kids and the headaches were so bad that it was causing me issues with basically thinking of how to handle an emergency situation that occurred then I decided it was time for me to have a heart to heart with the doctor. I still deal with the pain, the fatigue and the brain fog. There are days I have trouble with the simplest recall of things. I would not ever want to put one of my students (my 'patients' acutally) in danger because my brain was not working fast enough in an emergency.

I am just ready to find that miracle cure that folks hype! lol I know that is a joke but I am really ready to start over!

I do have some good news. I go on Thursday for my initial appointment for a research study for tens units and the effects on fibro. I do not expect a cure but it is good news that someone out there is doing some sort of research for us! I read the forms tonight that they sent me. There are 164 patients approximately that will be in the study in two locations.

I hope all went well with you and your getting back to work. Hopefully you will hear something about the eeg and mri soon. I am like you, I dont want to be disabled, I do not do well sitting at home all of the time! I want to be doing something, earning my way! I have to do what I have to do right now for me and that is to get all of this taken care of while there is a chance of me being able to improve!

 

[terbaer]

Tammy, Oooo! I think that's awesome! I'd try and be in a research study if there was one. I'll be anxious to see what you think......I sure hope you get the real deal and start feeling fabulous!

Well I got my results and I have stenosis and significant arthritis in my neck and low back. No surgery or magic cure for the pain or headaches. That hit hard. I don't know if I really have any options left. I'm supposed to go to the University pain center in July, but now I'm wondering what they can do. Sounds like disability retirement is difficult even with all the things I have going on. Twenty-nine years with the state doesn't seem to count for much when you're too young to retire. Disability retirement is less than 1/4th of my current salary. My husband has been supportive and says somehow we'll make do....I'm scared but am really starting to feel like it's the best option. Maybe I'll have more energy for my daughter and family.....