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hopeless
7 Replies
cannotaccept - November 18

HI All,
but really... how does one cope with trying to live a "normal" life. I've had fibro for, i dono, about 2 years. I had a high stress job that i receintly lost becuase i was out for too long. (depression really sunk in) I have no friends because i have nothing "good" to talk about anymore. I have a hard time accepting i have fibro but i believe it came upon me because i pushed myself too hard for too many years. Sure maybe one of those minor car accidents may have jared my neck and thats the cause but who really knows right? The first thought i had when diagnosed was that i have to live with this for the rest of my life. That thought is soo depressing. Others really dont get it. The fact that day after day is a struggle just to do the things taken for granted. I dont want to say no, i shouldnt do that or i'll regret it. So for a while i didnt. I went to far, i realy pushed myself working on my house. The harder you push the harder you fall. How does a "normal" person understand it takes us a week to recover from a short bike ride, or days from just trying to hang a freekin curtian rod. Because were strong and push through it, they cant see it. I also lost my boyfriend because of this. I would be offended too if i touched someones arm and they flinched or squirmed because it hurt all the time. What kind of life can we lead like this? Is today going to be a good day or a bad day. I'm sick of it. I know you all are out there but ultimalty, i am alone. Guess i'm not seeing any light at the end of the tunnal. Oh, maybe becuase there is no end to this ride!! yay.
Im miserable today, sorry for no positive input, but thanks for the place to let me vent and rant.

 

Fantod - November 18

I've had fibro for about the same amount of time. It has not been fun adapting to living with this beast. I did the same things; pushed myself too hard and paid for it in spectacular ways. After putting myself through all kinds of hell, I finally got the mesaage. I can still do most of the same things, either differently or in smaller increments. I have developed new interests to take the place of the things I absolutely can not do any more. I have learned to say "no" gracefully and not feel guilty about it. I am grateful for anything I accomplish no matter how piddling it might seem to an outsider. My goal every single day is to get showered and dressed even if it does not happen until 5PM. Anything that happens past that point is gravy. I take things one at a time, in an order that suits my needs and when I can do it. Some people would call that selfish. I call it self preservation. My motto is: If you are going through hell - keep going! Are you seeing a rheumatologist for FMS? Are you satisfied with their treatment plan? You can go to the National Fibromyalgia Association website and get a referral to a fibro-friendly rheumy. Anew set of eyes might be a bigger help than you think. Have you considered seeing a pain specialist to see if they can make you more comfortable? Have you considered seeing a therapist for cognitive therapy? There is nothing wrong with asking for help dealing with all the negative emotions that FMS can cause because of debilitating chronic pain. I see a therapist a couple of times a month and they have been quite helpful. Now I generally feel at least mentally strong when the rest of me is falling apart. This is a good place to rant because we are all on the same sinking ship. I hope some of my comments/suggestions are helpful to you. Take care.

 

cannotaccept - November 23

Thanks for the responce Fantod. I think withdrawing from Effexor exagerated my depression as i wrote last. Or brought it out if you will. I have been in and out of therapy since i was 12. Good place to rant but it gets old after a while so i move on. Although, you make a good point that i do need to find a fibro doc. Last and only one i had was not for me. He didnt get it or get me. My rheumatologist is great, best doc i ever had. I should get a referal from her.

 

frangremlin - November 24

I now how you feel.Today is a bad day, it's difficult to accept we're not alone there is always some one to talk to even if it's just to say ouch it hurts to. I have a few good fibro friends who know where you're at.

Best advice keep smiling as much as possible.

I am happy to talk or grumble as the day may be.

 

Sonja44 - November 26

I've had fibro for about ... OMG... 9years! It's like AA... one day at a time... sometimes one hour at a time. LOL. Sonja44

 

kf7354 - November 29

I have just been recently diagnosed with fibro & myofacial. This all came on right about the same time I developed Varicella Zoster Virus. They say that it was triggered by some type of trauma. Which I do already suffer from major depression & Post Traumatic Stress Disorder. They say alot of patients with Fibro hae endured some type of abuse as a child which was my case. I also suffer from severe migraines and sinus & reflux. I have had more surgeries then I can count. Now they say it is possible that I have been diagnosed all these years and it was just probably the Fibro. Who knows. I also just did a sleep study & have sleep apnea. After the Virus I developed Post Herpetic Neuralgia or Trigeminal Neuralgia. Not oneof my many many dr's can agree on anything and just change my medicine. They say that trigeminal neuralgia is also called the "suicide disease" because it goes misdiagnosed so often and the pain is constant and excruciating. My depression is at an all time low & I can often see why they gie it that name. Since January I hae gained almost 50lbs and can't do anything. I take so many sleep medication I am often afraid that I am not going to wake up. My husband thinks it is all in my head, so I hae zero support as I am estranged from my family and because of how I was raised, I have no friends or noone I can turn to for support or help. My children who are 18, 16, 14, & 12 are so confused and my 12 year old is afraid I have cancer or a tumor. I have been on so many different medications I am so sick to my stomach and ended up in the hospital because I couldn't stop vomiting blood & bile. So many days I can't go on and my husband thinks I am lazy. I hae been of work since Oct 20th & do not know when I can go back. If there is something that a person can have, I have it. How does anyone get their spouse to understand & how do you explain it to your children so they don't think your lazy. I have become so embarassed of the way I look that my already low self esteem has even lowered. My therapist wants me to go to an in-patient hospital for help cause she is afraid for me. Some days I am afraid for myself also. But my children keep me going. I just hate the thought that they will always think of their mother as being "sick". I am only 39 but I feel 80. Any ideas or advice I would appreciate it. Thank you.

 

Fantod - November 30

kf7354 - Thank goodness you found us! You have more issues than any one person should have to manage. I can certainly understand why you feel so overwhelmed and unloved. I think you should listen to your therapist and go for in patient treatment. Of all the things you talked about, that sounds like the most reasonable course of action. Look at it this way, you will be in an environment where you will be given the support you so badly need. And, you may meet some people in the a similar situation. You need to talk with someone face to face who has and understands what it is like to live with chronic pain. You could try googling support group, the name of your city and chronic pain or fibromyalgia to see what pops up. I'd like to suggest that you and perhaps your therapist sit down and talk to your children and especially the 12 year old about your situation. You don't have to go into a lot of technical detail but the kids need to have some rudimentry understanding of what is going on with your health. Speculation is not the friend of any child with a normal imagination. I have a young niece who I am close to and had to have a chat with her. I'm not able to do a lot of things these days. She knew I was sick and thought it was something contagious and terrible. Once she understood that I wasn't going to die, and that we could still have fun but it would have to be done a bit differently everything was fine. now she offers to help me with little tasks so I "don't get so tired." As for your husband, FMS folks either have supportive or nonsupportive spouses. There appears to be no happy medium. If your husband is not naturally empathitic than the chances of getting him to understand are slim. Have you considered taking him to session with your therapist to discuss your medical situation? You could show him this website. It is very difficult to get someone who does not have chronic pain to understand that it is debilitating on many levels. I've tried saying things like imagine having a bad case of the flu 24/7. I put a clothes pin on the end of his finger to (sort of )replicate the pain of FMS. The clothes pin registered for as long as it was attached and then he forgot all about it. I can't say what will work, maybe someone else out there has some better ideas. Lets tackle the medical issues which is a biggie. Unfortunately, most of the people on this site will tell you that when itcomes to fibromyalgia (FMS) that you will have to be your own best advocate. This is tough when we all feel so lousy most of the time. You can go to the National Fibromyalia Association website and ask them for a referral to a fibro-friendly rheumotologist in your area. You need to make a list of everything you are taking and the dosage to the appointment. I'd also seriously consider a pain specialist who should have some good, if not better ideas of how to manage your situation. If you are unhappy with the way your medical situation is being handled than not only do you have to say something, you also have to act on it. The longer you let your medical gurus agree to disagree the harder it will be to get your pain levels under control. I take a very active role in my care; it is important to be an educated consumer especially when dealing with complex medical problems. Maybe if you can take charge of this issue you will have a better sense of control over your life in general. Finally, I would like to say that I think getting some inpatient care would give you such a sense of relief from your day to day worries. There is nothing to be embarrassed about; we all need help of some sort from time to time. The thing is you've got to recognise now is the time to take your therapist up on her offer. It could be the first step in making everything that is wrong in your life better. I hope that my comments are helpful to you in some way. Take care and let us know how you are doing.

 

from-fibro-2-college - December 8

sonja44...you got that right sista! LOL...one day at a time, or one hour at a time, and sometimes one minute at a time. I like to think "one prayer at a time"....It's so easy to fall into "why me", but wouldn't it be easier to just say "why not me"?...I loved your comment...I'm soooo there!

 

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