Fibromyalgia Community
Progression and Death
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Progression and Death

Everything I've read has said that fibromyalgia is not fatal.  However, a local obituary listed cause of death as fibromyalgia.  Can fibromyalgia affect internal organs such as the heart or otherwise cause systems to fail and cause death?  Thanks in advance.
13 Comments Post a Comment
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Avatar_f_tn

Wow... I would like to see that obituary. I'm not sure about fibromyalgia, but I do know that CFS can kill and family members of deceased loved ones had fought hard in court to get CFS listed on the death certificate as the cause of death.
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Avatar_n_tn
Thanks for the response.  Do you know what the actual cause of death is in the chronic fatigue syndrome deaths?

Unfortunately I did not see the obituary.  It was mentioned to me by an acquaintance of mine that I've just gotten to know who also has FMS.  I called our local paper and they couln't search back far enough to check.  If I can find the energy I'm going to go to our local library to try to find it.  If I do, I'll let you know.
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Avatar_f_tn
i dont know about fms being cause of death but sometimes i feel like it is killing me!  when i am having a bad day i wonder how long is this going to go on , it has just taken over my life it seems!
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Avatar_f_tn
No studies have show a coorelation with death.  However, I think it's because no studies have been done yet.  It's not an obvious connection if there is one, so it doesn't stand out.

However, I know and have spoken with two respectable people (one a CFS doctor, one on the cfids board or some other advocacy board) who believe their relative died of heart failure related to CFS.  It's not a common story, but it does have an erie ring to it.  

Officially I know of one death on a certificate and that was in England for dehydration from CFS.  The list Chris mentioned is interesting.  However a lot of those are loosely connected not directly (a fall from lack of balance for instance), and it was a little too, well too something, for me to take it all in.

The other relationship to death is suicide and the rate is similar to MS and other chronic debilitating illnesses.

It is possilbe iwth the funky immune system that we are more susepctible to cancer.  No evidence of that yet even annecdotally.  There is a much higher rate of ovarian cysts (similar to other autoimmunes like lupus and MS).

I don't think about it much (higher death risk).  It hasn't been obvious in any way that gets me worried.  However, if one is in the pattern of overdueing until they literally collapse (not just get exhausted), I'd suggest figuring out a new pattern.  I had (common) intense chest pains for a while, but they were smooth tissue NHM related, not heart related, and not a risk of anything.

Well, that's what I know about that topic.  Hope it gives some ideas.
Have a good day!
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Avatar_f_tn
No studies have show a coorelation with death.  However, I think it's because no studies have been done yet.  It's not an obvious connection if there is one, so it doesn't stand out.

However, I know and have spoken with two respectable people (one a CFS doctor, one on the cfids board or some other advocacy board) who believe their relative died of heart failure related to CFS.  It's not a common story, but it does have an erie ring to it.  

Officially I know of one death on a certificate and that was in England for dehydration from CFS.  The list Chris mentioned is interesting.  However a lot of those are loosely connected not directly (a fall from lack of balance for instance), and it was a little too, well too something, for me to take it all in.

The other relationship to death is suicide and the rate is similar to MS and other chronic debilitating illnesses.

It is possilbe iwth the funky immune system that we are more susepctible to cancer.  No evidence of that yet even annecdotally.  There is a much higher rate of ovarian cysts (similar to other autoimmunes like lupus and MS).

I don't think about it much (higher death risk).  It hasn't been obvious in any way that gets me worried.  However, if one is in the pattern of overdueing until they literally collapse (not just get exhausted), I'd suggest figuring out a new pattern.  I had (common) intense chest pains for a while, but they were smooth tissue NHM related, not heart related, and not a risk of anything.

Well, that's what I know about that topic.  Hope it gives some ideas.
Have a good day!
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387615_tn?1200440998
i have fms and some of the meds they put you on ie amitryptolyne can make your hear race 120 bpm  for three solid weeks - in the first week my pharmacist and i decided to go off the 10 mg dose (as i could not talk to my specialist who had written the script because he had one arrogant receptionist and my doc was on holidays - no one else wanted to say or do anything) and it took two weeks for my heart to go back to normal- i am very thankful for my pharmacist - there are so many symptoms with fibromyalgia that affect organ systems and muscle groups (everything is connected in one way or another)- as with chest pains - there are so many layers of thin muscles lining the ribs ,in between  and in the back - i always use heat(cool for itis's)  first then check with the doctor
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Avatar_m_tn
If the person with CFS or Fibromyalgia is XMRV positive, they could die as a result.  The cause of death could be the following:

Congestive Heart Failure due to Mitral Valve Proliferation
Brain damage ( due to pin sized leisions in the brain or circulation problems or low blood volume) or
cancer (especially blood cancer--the disease damages the natural killer cells putting the person at high risk for many different cancers.  However, blood cancer is most likely because sometimes the body will compensate for the Natural Killer cells not working by creating too many white blood cells.)
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Avatar_f_tn
Ever since I became ill and was finally diagnosed with CFS and then FM, I have had a high white blood cell count.

NOBODY...no doctor has been able to explain this to me.  I've seen a hematologist (had a bone marrow biopsy), a rheumatologist, a virologist, neurologist...the list goes on.  Why are NONE of them able to explain why my white blood cell count has continuously been higher than normal for more than FIVE years?????

Wow...I'm glad I found this thread.
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Avatar_n_tn
Thanks so much for the replies.  I'm currently ending a very stressful period (son had a kidney transplant) and I've been in a flare for months as a result of a bad fall I took last winter. I'm overweight even though my caloric intake is low. My thyroid is normal and my doc says I must exercise vigorously and cut calories. She recently started working out with a trainer and lost a lot of weight and is now on a crusade to have folks drink a protein shake for dinner and do spin cycling and all of the stuff she does. She knows I have FM and has been somewhat sympathetic but still insists I must be doing something wrong to be this heavy.  I'm so sick of it all. The meds that I've tried have caused or carry bad side effects and I yearn for a good night's sleep and to feel "normal" again.
msvjv
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Avatar_f_tn
I must be the percentage of fm/cfs folks who attempted suicide, mostly out of pure frustration of being locked in a body that doesn't work the way it used to. I haven't worked since 2009. I was awarded SSDI in 2012. I feel completely useless most days, I take a lot of vitamins and 4 Rx's I'm sadly better then I was but never where I used to be. I have to over and over come to the realization that I won't work ever again, and I'm only 43. I keep hoping I get better to my best but Im trapped at mediocre or less. Most of the deaths you hear about sadly are from suicide or accident. I wouldn't wish this on my worst enemy. The bible says those who lose there life will gain it.Matt 10:39 my hope is in You Lord
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1713742_tn?1363958422
I'm 43 with fibromyalgia, and I haven't worked since 2010. I've applied for SSDI, but I had to appeal, so it's still going to court. It totally changed my life. I was bedridden the first year it became full-blown. I cried all the time, I ALWAYS felt terrible - always too tired, but never could sleep. I have a son, and I was despondent over that - not being able to care for him the way I wanted to, and I felt that my illness had totally changed his life - and it did, from everything about our financial life, quality of life, to when he had supper, the type of help he had with homework, where he could go, everything. I felt like such a terrible burden on my family. It was a year before I changed doctors and was put on Neurontin. It saved my life, but it's taken it 2 years to get me where I am now. I'm not near as strong - weaker than I've ever been, I've gained 60 lbs through the past 4-5 years, my family has been totally uprooted and dislocated two times, due to my husbands efforts to provide for us while I'm sick. I look older, my memory's not what it used to be, my back still hurts me terribly every day, even though a lot of my symptoms have been relieved by using the Neurontin. I don't know if I'll ever be able to quit that medicine. I've also been on the highest dose of Effexor for over a year now, because I was so hopelessly depressed, I couldn't take it anymore. It's helped tremendously, but even with that, I can't allow myself to take in the gravity of my situation very often, because it is so upsetting to me, I'll always cry, and I HATE to cry. I've done it way too much as it is. But I please wanted to encourage you not to give up - I DO feel tons better than I did! Who knows, if you don't live it out, how will you ever know that you may have overcame much of this condition, or in how many ways you might? I would've gave up, but my son - I just couldn't. I would never leave him like that - he doesn't have much else or anybody else in this world but me and his father, and I was NOT going to abandon him. And I'm so glad I didn't let it convince me to do the worst thing I could have done, because today I can live so much more normally with him. I'm so glad I stuck it out. We laugh and I get to hurting a lot or tired, but he's 13 now, and he'll actually push on my back or massage it to relieve my pain. He really cares, and he's such a good boy. He gave me a reason to push on. I'm glad you pushed on as well. I just wanted to comment, because as I was reading your post, I wanted to cry. I am so familiar with the near total loss of your life this condition, syndrome, or whatever it is, will take from you - and your family. And finding good medical care isn't easy. I have NOT had what I've needed, and not sure social security will approve me, based upon the medical records I do have. It's so sad to know how some people must suffer and still not have any type of security of financial relief, even after years of suffering. Thank God I know I'm not in the worst-case scenario anymore, and I'm praying it never gets as bad as it was at one time either. Hope things go better for you!
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Avatar_m_tn
I feel the same way.  I loved what I did for work.  My identity rested on my job.  I understand the stats for suicide as how can we feel so sick and not want it to end on those horrible days?  What keeps me going is that my Mother and siblings do not deserve to bury one of them and I could never ever leave my children in that way.  I like the verse, that helps alot today, been a rough tearful day.  I m also in my 40s and been sick since my 30s.
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Avatar_f_tn
   Been there, done that.  Hurt so bad I wanted to get it over with.  Fortunately, I found some supplements that help me with the pain:  Essiac, MSM, Calcium with D3 and Enzymes.  The enzymes help with the chronic stomach problems that come with FM.
       Hope this information was helpful.  Wishing you the best.
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Avatar_f_tn
My mom died with suicide as a primary cause of death and fibromyalgia as a secondary on her autopsy.I have fibromyalgia and I have to take stimulants to keep me awake during the day. The problem is, my heart is not in the best of shape (probably from long term stimulant use) so I hate taking these meds but its either that or sleep all day and never work, enjoy my children or live life. Im just grateful to be alive everyday but this retched disease IS a killer to me from my experience
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Avatar_f_tn
  Look up Hawthorn Berry  supplement.  It is so good for the heart.  It takes the place of some of the heart meds that are prescribed.

   Wishing you the best... PS  I am taking Hawthorn instead of Lasix and Diltiazem.  it has worked better on my blood pressure than the prescriptions ever did!
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