Living with fibromyalgia, FMS and Chronic Fatigue Syndrome, CFS- also known as ME, can often take over your life and turn you into a shadow of your former self. Except for pain, you have to struggle with impaired memory, concentration difficulties, apathy, fatigue, anxieties, listlessness, nervousness, panic attacks, irritability, faintness, tremors, painful intercourse, sweating, anxiety, heart palpitations, insomnia, feelings of guilt and failure, and even suicidal thoughts. These are some of the more common symptoms one might meet.
Fibromyalgia and Suicide
by Sannel
Living with fibromyalgia, FMS and Chronic Fatigue Syndrome, CFS, the feeling of pain and hopelessness can lead to severe depression, social isolation, and even suicide.
To understand fibromyalgia we must first have in mind that there are varying degrees of fibro. To many the fibro doesn’t limit them very much. They can still keep a job, do activities and socializing like normal people. To some the fibro may flare up once in a while and last just for a few days. Others may have just a mild version of fibromyalgia. And to some of us, the pain is so extreme that our lives has been totally destroyed.
BUT YOU DON’T LOOK SICK!
The one thing that makes fibromyalgia so hard to live with is the fact that you do not look sick. Fibromyalgia is also called the invisible disease.So even the people closest to you have a hard time to understand your situation. Usually, people who are suffering from fibromyalgia, try their best to give an appearance that nothing is wrong with them. They take extra care to look their best and when they meet people, they sound and look very cheerful, hiding the pain and exhaustion they really feel. However, that takes very much of our energy, so often we try to avoid socializing all together. This behavior usually after some time becomes a quality of life where you get more and more isolated from family, friends and finally the world.
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Even the tear that trickle down my cheek is painful. . .
I am suffering from Fibromyalgia and Chronic Fatigue Syndrome myself. It's such a painful thing in my life and it has taken most of the enjoyment out of my life. Stress and anxiety will make my pain and thoughts to commit suicide to increase. Almost every fibromyalgia patient have thoughts of suicide. If you have fibromyalgia and are not thinking about it, you most likely have a milder case.
Except for the physical torment, I mentioned earlier, there is also the emotional pain of misunderstanding and/or lack of knowledge from family and friends. Perhaps rejection from spouse or your loved one. In many cases there could be financial and social ruin, since persons with fibromyalgia often lose their jobs. The overwhelming feeling of pain and hopelessness, combined with feelings of failure, guilt and broken dreams can lead to social isolation, severe depression, and even suicide.
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The severity of Fibro-fog varies from day to day and from person to person.
Symptoms of Fibro-fog:
- Inability to concentrate
- Mental confusion and fatigue
- Impaired thinking
- Inability to recognize familiar surroundings
- Inability to comprehend written or spoken words
- Absentmindedness
- Loss of short-term memory
- Disorientation
- Trouble with directions
- Short attention span (seems like ADHD; sometimes speaking over others)
- Acquired dyslexia (includes difficulty speaking known words)
As soon as you start living, the symptoms and the pain will get even worse. . .
Living with fibromyalgia is a 24 hour, 7 days a week painful life. On the rare occasion that we feel almost normal, we will over do it because we are so extremely happy and excited that we actually are able to do something other than just lay in bed. However, this feeling usually does not last long, because as soon as you start living, the symptoms and the pain will get even worse. In my case, it forces me to be completely inactive for days, and with a mental state of complete exhaustion.
Before you reach the stage, when you actually know what's wrong with you, it may take years of struggling, going to one doctor after another, until you finally find someone who has the knowledge and understanding about fibromyalgia. As soon as you have been diagnosed, it helps you mentally, because you finally know what's wrong with you, but it will also bring you grieve, knowing this treacherous pain will be your constant companion for the rest of your life. The thought of never feeling "good" for the rest of the life is a tough pill to swallow.
The cause for fibromyalgia is unknown
Possible causes or triggers include:
- Abnormal pain response - areas in the brain that are responsible for pain may react differently in fibromyalgia patients
- Emotional or Physical trauma
- Infection, such as a virus, although none has been identified
- Sleep disturbances
We have to take one hour at the time.
The pain and this isolation brought on by the constant all-consuming pain and exhaustion can sometimes be too much to bear. I'm sure the thought; how wonderful it would be not to wake up in the morning, has crossed the minds of people who are suffering from fibromyalgia. I say this because that thought crosses my mind almost every day. It is an everyday struggle to accept that we actually have to live this way. And believe me, it's not easy. We have to take one day at the time, or as in my case, one hour at the time. It becomes a quality of life issue. I have learned to make the most out of that hour or hours when I feel almost normal, like laughing and speaking on the phone with friends.
It's difficult for “normal” people to understand us
I know there will be times when I feel so weak, tired and sad that I can't cope with it alone, but when those times come, it is reassuring to know that I can turn to support groups on-line, there people with fibromyalgia can talk and help each other out. People with fibromyalgia need to talk to others with the same disease, who understand your situation as much as yourself, since it's difficult - or quite impossible, for “normal” people to understand us.
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Life is after all incredible. . . the good. . . and the bad
Fibromyalgia is a horrible disease to live with. It has left me weak and frail, but I always manage to get through the day, with the hope that someday I will get my old self back. And until that day comes, I will help help out as much as I can to help others in the same situation. I Just Can't Say It Enough, but life is incredible. . . the good. . . and the bad. To take our own life is not right, It means this horrible disease has prevailed. Everyday I push myself to concentrate on the good things in my life and not dwell on the pain or what it has taken from me, because, there is still so much to cherish in this life and the most beautiful gift of all is being alive.
You are not alone. . .
If you're suffering from fibromyalgia, and the pain is so great you do not think you can handle it anymore, remember you are not alone. There are so many of us that truly care and understand, and who would love to talk to you and help you through this, because the next time, it may be you that will be helping me when I reach out for help.
The overwhelming feeling of pain, loneliness, despair, sadness and hopelessness can be just to much to cope with alone. If you are having thoughts of suicide, you need to talk to someone as soon as possible. There are many FMS support and chat groups on-line. You can reach them day and night. There may even be a fibromyalgia support group in your area who are willing to give their help and support.
You need comfort and compassion to go through your day, and the faster you get in contact with other people in the same situation as yours, the better are the chances that you'll be able to cope with your life, even when you suffer.
Please, just remember;
You are not alone. . .
I hate pain!
You can't see how much it hurts
http://www.myspace.com/video/vid/30497439
Lisa's Story
http://www.mdjunction.com/fibromyalgia
Fibromyalgia Support Group Online
http://www.healingwell.com/community/default.aspx?f=24
Community Support
http://www.livingwithfibro.org/forum
Patients living with fibromyalgia
http://psychcentral.com/helpme.htm
Suicide Helpline
http://unsuicide.wikispaces.com/Online+Suicide+Help
Online Suicide Help
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 | What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Revers... Over a decade ago, Dr. R. Paul St. Amand, an experienced endocrinologist and UCLA assistant clinical professor, published his protocol for reversing fibromyalgia based on nearly... |
Please, let me help. . .
I would love to hear from others who suffer from Fibromyalgia FMS and/or Chronic Fatigue Syndrome, CFS- also known as ME. I'm willing to lend an ear and a shoulder for you to cry on when things are tough. I truly care and understand, and I would love to talk to you and help you through this. Please leave a private message and I will get in contact with you, or leave a comment in the comment section. . . Sannel
Behind my sweet smile, I hide the painful tears that no one can ever see or feel . . . . Sannel Larson
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Thank you for reading,
Sannel
Updated: 10/08/2017, Sannel
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Please leave a comment!
Hello America Figueroa,
I'm so sorry that you too are suffering from fibro. I know how frustrating and lonely it can be before you're finally diagnosed. But now when you know, it will be easier for you to go on with your life. Now you can begin the mental therapy of accepting your illness and make the changes you need for you to live life to the fullest even with a crippling disease. However, talking about my own experiences, it will not come overnight. But it will eventually.
Thank you for taking the time to leave me a comment, sharing your own story. It's a great feeling to know that by sharing my own suffering, it may help someone else understand a little bit better about this horrible disease.
Sending good, positive energy and blessings your way,
Sannel
Hello Sannel, I really appreciated all this valuable information. I was thinking I was losing my mind. For the past few yrs I'm been fighting against a "ghost" disease until this Tuesday I was told I have Fibromyalgia. I didn't really understood so I decided to Google it and I found out your website. I'm amazed for what I read since you described me by your writing. I cried with the relief of SOMEONE really understanding me. Thank you so much
Yes Tammy, it's that easy! :-) As soon as you sign up it's all pretty straightforward, There are also tutorial videos and forums you can turn to if you need help. Also, check out JoHarrington's "Tips and Tricks" articles here on Wizzley. They are of great help.
I wish you all the best, and I'm looking forward to read your first article here on Wizzley.
Going back to my gp won't help any with the anxiety & panick attacks. He took the xanax away & said it was either that or my pain meds. I can't get both thru him anymore or he would lose his license or go to jail. He said it had to do with Obama & his new medical laws. I have to see a therapist to get put back on the xanax.
Have tried several other non-narcotic anxiety meds & they don't work & I usually end up having side effect issues with them. And the cost of trying new meds is ridiculous since I have to pay out of pocket 100%! Last month alone was $500 for 4 meds! That is why I filed for medicaid but still waiting on their decision.
And yes, getting out of bed, showering, etc is the most difficult thing! I am lucky to accomplish it twice a month & that is when I am forced to :-(
Yes, I would like to get started on Wizzley! Writing or journaling would be helpful & therapeutic I think & maybe help others in a position like mine.
I also have emotional issues still, over the death of my first husband & writing about that journey & loss would help me also.
So do I just go to Wizzley.com & sign up? Is it that easy???
Tammy, Sorry to hear that you're going through crap. If you want to get started on Wizzley, then you can be sure that we'd all be around to help you settle in. (If that was what you were asking!)
Tammy, I'm so sorry! You have so many other issues to deal with besides fibro and cfs. Please go back to your dr and tell him about your panic attacks. If he does not understand, seek another doctor. It's very important that we get the help we need. Unfortunately, because of our constant exhaustion, it's difficult to take the initiative to seek help. Just to get out of bed, take a shower and get dressed are too much to handle. Stay strong, dear Tammy.
My prayers are with you.
Hugs,
Sannel
Thanks for the replies!
Sannel, I am being treated by my general dr for everything. The rhumy I saw sait my regular dr could treat me just as well, so after that statement I felt unwelcome at his office.
He has me on meds for the fatigue but they are dangerous for me to take routinely because they raise my blood pressure to stroke level & the b/p med doesn't help much. The pain meds are a given. If it wasn't that the fatigue & memory loss are so bad, I'd be able to work or live some kind of life. But I lay here day after day, in pain & so tired no matter how much sleep I get & rarely ever go anywhere or see friends & family. Makes life miserable.
I've tried antidepressants & haven't found 1 that works well enough without causing other issues. The xanax helps a great deal. Been on it over 20 years & my dr recently took it away. So my anxiety & panick attacks are coming back & getting much worse. It's scary & I just want my medical help to come thru so I can get the help I need thru a therapist!
Don't know how long it will take. It's been forever already! Here in the U.S.A., they take their sweet time in making decisions & sometimes, in the end, it's not even worth it. The help offered is very minimal but I need the help desperately so I will continue to wait & pray that the help comes soon.
HelloTammy,
Thank you for leaving a comment here. By explaining your pain and symptoms from fibro and cfs you make life less lonely to the rest of us, who's in the same situation.
I know how hard it is. The hopelessness you feel! It took me years and years before I finally found a doctor who truly believed in me. This doctor took the wise initiative to bring me to doctors who were specialized in these illnesses. Still, it took me a very long time before they found the right medication, just for me. Until that happened, I starved myself, waiting for my heart to stop to end my life. Thank's to a close, dear friend, I was checked into the hospital psychiatric ward.
That's the best thing that could have happened to me. This was a psychiatric ward in Sweden, and they took care of me 24/7. The staff was absolutely the most sweetest, wonderful people, who truly looked out for me. I have tried everything. . .and believe me. . .I have tried everything!!! There are no pain killers that will take away- or even diminish- the pain that I have every single hour of the day. Fortunately, I was put on anti-depressants. And that is what helps me live with my constant pain and fatigue. I must take sleeping pills, otherwise the pain will keep me awake. Those pills are necessary for me to handle my pain and fatigue each day.
Other than those two little pills each day, plus a whole lot of positive thinking and mindfulness, the best medicine and therapy has been my writing. I started to write when I was at my lowest and that's the best thing I have ever done in my life. Writing kept my mind of the pain and it gave me the spirit I needed to go on with my life. Now, I have so many wonderful friends on-line, who encourage and support my writing. So Tammy, please pick up the pen and start writing. There are so many writing communities, like Wizzley, Hub Pages, Bubblews, and many others. Also, find a doctor who's specialized in fibro and cfs. Please know that you're in my thoughts and prayers. I wish you all the luck! Sending positive energy and hugs your way,
Sannel
Tammy, I am far from you, in Britain, but my thoughts and prayers are with you.
You are unsure how to be part of Wizzley! I have taught English/writing skills and I say to you from my experience: SIMPLY BEGIN. Write an article. Speak. Do not fear rejection. We are with you.
Please note: none of us is medically perfect. My sight is failing and in my seventies, ten to fifteen years hence, I will need an operation. It is routine, and I will see fully, but at the moment I need extra light to read, and I have to wear glasses that shield me from the full effect of the sun. I have no doubt that other writers have their medical problems as well.
I am so happy I came across this today! Every single word I read is absolutely so true & describes myself, my daily struggle & how I am perceived by my family & friends.
I have reached the point in my "fibronyalgia & cfs life" where I have lost my job, which became so difficult to manage, have filed for disability & had my 1st disability phone interview this afternoon & tried over the weekend to explain my depression & suicidal thoughts to my family, who seem to still believe it's in my head & I am capable of just "sucking it up" and move on with my life like there is no illnesses.
Last week I almost checked myself into the hospital psychiatric ward because my suicidal thoughts were getting bad, but thankfully my baby brother helped me by listening & checking on me.
Last night I had a severe anxiety attack that scared me so much!
I am currently trying to medical help by a therapist but unless the State will grant me medicaid, I'll not be able to get the therapy I need unless I check myself into the hospital, which I do not want to have to do.
I would love to be able to be a part of this, a part of what I read above & the supportive people who have left comments but am unsure of how.
Bless you all & bless those who wrote the articles or paragraphs above!