Why are we so alone?

Discussion in 'Fibromyalgia Main Forum' started by Supermami, Sep 4, 2010.

  1. Supermami

    Supermami New Member

    I was diagnosed with FM 12 years ago.
    Reading all the posts at various sites over the years I noticed how alone we all are.
    We face this pain and cope with little support from our family and friends.
    We look to doctors first for healing, then for easing of the pain. We end up settle for finding one who will just understand and not look at us with disdain like we're drug seekers.
    Friends stop asking us to go anywhere and families never understand and think we're lazy or unmotivated.
    Why are we so alone?
    Why is there still a stigma that this is a psychiatric problem and not a neurological one?
  2. kat0465

    kat0465 New Member

    this seems to be the main topic at the moment supermami. for me personally, i think with all the positive things coming out lately i was Hoping that would light a fire under some A**es

    the day i got the news that xmrv was credible, i was so excited! ... my Husband said what is XMRV??!!! i thought he was kidding, i have been talking about it for months.

    He wasen't kidding :( wen't to my cfids dr friday, she hasen't breathed a word about it. and she is an aids expert.
    i also Posted some stuff on my facebook page, and Magically the few friends i had left that would even ask how i was from time to time, seem to have dissappeared also.

    whats it gonna take? thats a good question.

  3. Janalynn

    Janalynn New Member

    Fibro is a very lonely condition.
    I think merely by what we suffer from we are isolated because often we can't go out and socialize when we don't feel well. We often don't show the same signs the other diseases show that gain sympathy from people; i.e., we're not dying, we're not crippled per se. Many people still don't know a lot about it. However there is a lot more awareness now that there has ever been.

    More than that though, no one can truly understand what we're going through unless they've gone through it (probably like most other things). This is even hard for us to understand sometimes. Our symptoms don't often make a lot of sense. We try to do right by our bodies, yet we still hurt for no reason. We try to rest, yet we are exhausted. We try not to feel guilty when we can't do the things we need to/want to do, yet the guilty sneaks in as we watch our days go by. Lonely indeed.

    I have an incredibly supportive family - the kind that insists I rest. How grateful I am. I can't imagine how it feels not to have that. Yet I still feel like I don't want this label so I've been pretty careful up to recently to fight it. I can't any longer.

    If you are facing a psychiatric stigma from anyone - then they are extremely uneducated. I can say that I haven't faced that at all - not from a Dr., not from any friend, family member or stranger I've bumped into. I've never been labeled lazy or unmotivated either. Maybe I won't allow it, or I ward it off before someone has the chance to even say it or think it, by educating them? I'm not really sure.

    As far as drug seekers goes - I would say that we are pain relief seekers. We are desperate for someone to help us find pain relief. I know that no Dr. is going to 'heal' me right now, so yes I will settle for one who is understanding, takes the time to listen to me, and is concerned about my pain. Thankfully my Dr. is also up on Fibro and all of the latest developments.

    I remember my first visit with him (after I'd been crying) he put his hand on my shoulder and said "we're not going to forget about you, there is a lot of research being done"

    You have to find one or two people who you feel are supportive. Maybe not your everyday 'go to' people. (I don't talk to people about my illness daily) but people that you know understand you. Also a support group might be helpful if you can find one to attend.

    Regarding the stigma - I think it's going away, but if you hear someone saying or if you read otherwise, take the opportunity to educate people.

    At least we have each other here.
  4. AuntTammie

    AuntTammie New Member

    I can so relate to feeling alone.....have gradually lost more & more friends bc I just can't get out much at all, and a couple of weeks ago, my parents decided to move out of state, and a couple of days ago I found out that my Bible study is disbanding. We don't meet over the summer, & though I have missed a lot of the meetings over the last yr (due to being too sick), I have been really looking forward to resuming this fall. They are pretty much my church (cannot attend regular church becasue of ME and MCS issues) and my entire social life......and I really need their support (prayers/ emotional support/etc) now more than ever with my parents moving and my health worse than ever.

    I was also hoping that they might be able to take me to doctor appts once in awhile & possibly help with a couple of other things as needed. Unfortunately, though they are caring people, they are also busy and have their own lives (which are quite different from mine) and don't really understand how sick I am, so outside of Bible study, we don't get together. So, I don't really think that I will be able to ask them for help if I am not seeing them anymore otherwise.

    Aside from online (& even that is becoming increasingly hard to do - the computer screen makes me get really sick if I stay on long & the chair causes a lot of pain, too, if I am on too long), I am now down to 4 friends who live at least sort of nearby, and I am almost never up to seeing them. (I saw all of them put together a total of 3 times in the last yr). One of those friends has a bunch of health problems, too, and cannot drive, and though she sort of understands my illnesses, she is still able to do a lot more than I am, so she just thinks I should be able to "push" through things, and she is starting to really stress me out as a result.

    So, anyway, I am becoming extremely isolated and really bummed about it, too......sorry if it seems like I am hijacking this thread - not intending to do that at all.....just relating.

  5. greatgran

    greatgran Member

    I think one reason is no one understands and to be honest if I didn't have this disease I don't think I would have a clue as to how we suffer, physically and mentally and what we have to endure just to make it through the day.

    I remember my Mom must have had this because looking back I can see so much of me in her.. She would say you just don't get it.. Oh, how I wish I could have understood half of what she was going through.. Of course she was treated for depression and many thought she was a hypochondriac.. I kept telling her to get out and she would feel better.. oh, little did I know..

    The only comfort we have is one another cause we are the only one that gets it..

    God Bless,
  6. Supermami

    Supermami New Member

    Thanks to everyone who responded.

    When I was diagnosed 12 years ago I had gone to a different doctor who was subbing for my primary. He found spots to push on that about made me jump out of my skin. I didn't even know that those spots were painful. He put me on some medication (flexeril and amitriptyline) and told me that it was fibro and that there had been some confusion but that the medical community was finally starting, on a whole, to see it as a physiological and not a psychological problem. This was so new to me, someone who saw my pain as real and not hypochondriacal,
    not dismissive but understanding.

    I went home and surfed the net. I found a major medical site (still out there today but singing a new tune) that said it was mainly a psychological issue that had to do with people's perception of pain and that depression was a good part of it.

    I then looked up the medications and found one to be a muscle relaxant and the other an antidepressant. I started crying because I felt that maybe the doctor was trying to treat what he felt was the real cause, depression. Placate the depressed psych case so that she feels better. I now know that he was just a doctor that was more up to speed then even the websites I visited.

    I took the meds until the side effects, heat and sun sensitivity, were too much for my relocation to a desert community.

    For the next eleven years I lived in pain that came and went from an annoyance to a huge barrier to life's regular workings. I lived in denial as I found coping mechanisms to make some things easier. I did this without even thinking about it. Marching through the pain and fatigue, because if it was all in my head I could put it behind me, rise above it. I am a person of strong will. So, I spent vacations shopping instead of hiking, crying behind sunglasses as I trooped through, because if it was only a problem that was pain and not damaging of my body I could live with it.

    Well, here I am, after all this time, knowing that there are no more coping skills that help me. It has gotten steadily worse over all these years. I can't hide anymore. I realized I was skipping not just the extra things, but daily things, to avoid the pain. I didn't want my kids to look back on their childhoods to remember Mom as being snappy and doing nothing. I knew it was time to go back on medications.

    I started reading internet sites about fibro again. The information was so different then those years before, and there was so much more. There were even symptoms that I have that I had never connected to the FM. Wow, what a shift in my world.

    I started meds again. It helps some. It is nice to sleep, really sleep again. I can sleep on our new mattress with my husband again. (We got the new one when I thought that might help with the sleeping and pain. Last ditch effort before resorting to meds.) Some of the backround pain has eased. The real bone jarring pain is still there but maybe I handle it better.

    My husband still doesn't really understand. Over the years his stance has always been, "Why don't you see the doctor?" Like a doctor could cure it or something. Well, I finally went to the doctor again and he knows it won't be cured. This is his baggage that was carried into this relationship. I've always thought that he would leave me if I ever got truly sick. This baggage I carry is mine.

  7. mbofov

    mbofov Active Member

    why they have denied the reality of CFS for the last 25 years, why they've denied funding for research, despite irrefutable evidence which shows it has physiological underpinnings (e.g., immune deficiencies). I would really like to know the answer to this question.

    It seems to be medicine's default position that if they don't understand something, they say must be all in our heads. What doesn't make any sense to me is why they won't even look into doing real research.

    With the new NIH/FDA XMRV study, CFS and FM (and hopefully us too) may finally get some respect.

  8. justdifferent

    justdifferent New Member

    I've had two husbands leave me because they did not want to take care of me.

    I am a single parent sharing custody of my children. I must work full-time as long as I possibly can, and have little support from my family of origin for various reasons - my parents have serious health concerns of their own.

    I'm afraid. Afraid of the day I can't work any longer. Afraid that I'll be too sick to even move out if I lose my house. In despair for my children, who don't have the mother they should have.

    I have a long-distance relationship and I've sent my SO a link to information on CFIDS. He was incredulous. "You don't have THIS," he said. Oh, but I do. When we met I was doing okay. I'm not now.

    My mother said to me, "You've never been the same since you had mono." Very true, and I was glad she said it. As a teenager with severe mono pre-diagnosis, I'd made my peace with the possibility of having AIDS, or cancer. I was ready to crawl into bed and die. It took months for me to make a partial recovery.

    Now it's almost 25 years since I had mono, and once again, I'm ready to crawl in bed and die. Only I won't die fast enough. I have adult responsibilities. I have children who desperately need me. And I wonder: how did it get to this? Why is our society so alienating of those who are ill? Where did my extended family disappear to, the people I worked with to care for the older generations? Who will care for me?
  9. Tizz

    Tizz New Member

    I think that's the main reason why fibro/cfs is so lonely. If you're paraplegic or blind or deaf, most people are compassionate at least to a degree. They can SEE that you're handicapped.

    But with us, there just isn't much to SEE. Our health problems are invisible. And that makes it OH, SO MUCH easier for people to consider us hypochondriacs or say that we're in pain because of depression, or -- worse, to assume that we are FAKING things to try to get pain meds.

    If we walked around with white canes or used wheelchairs or talked in sign language, I think it might make life simpler for us in some ways. I mean, at least we wouldn't have to deal with DISBELIEF along with everything else...

    [This Message was Edited on 09/05/2010]
  10. Tizz

    Tizz New Member

    ...are very helpful if you are bedridden.

  11. AuntTammie

    AuntTammie New Member

    thanks for the idea, but there is no way I can afford a laptop
  12. AuntTammie

    AuntTammie New Member

    Yeah, rt now even 300 is too much - I'm on SSDI and it doesn't even cover basic living expenses

    I think if I found a deal like your grandson did, I would somehow find a way to buy one, but otherwise as much as I would love to get one, it is out of the question

    PITATOO Member

    There is a lot of truth to what you say. I think one reason we feel alone is that all of our energy is spent just getting through the day so we can't relate and others can't relate to us the way we used to. People without FMS/CFIDS have the time and energy to do things we would/can't even attempt so I think we shut ourselves off a bit. We have to, we have had to learn to say no etc... There are very few people in my life that understand. I have one best friend that truely understands. If we "hang out" he understands that if we are "out on the town" that when I say it is time to head home, it is time. I know when I am ready to "crash" and have to get home asap and go to bed. Other than that one person in my life no-one has yet to understand. I've had FMS/CFIDS since 1993 and then I was only 30 years old. So it has been tough. Just last evening I had people at work that came in from Mexico and other place who wanted me to go out for a couple of beers after 10 hours of working. No way could I go. Maybe if I did not have to come back to work today. I must say I am lucky/blessed that I am able to work most of the time. But afterwards I barely have enough energy to even eat dinner and then go to bed and start all over the next morning. So by the time Friday comes along it takes me 1 full day to recover from the workweek if not 2 days. I HATE it. But I am only 47 so I am not even close to being able to retire. I have been divorced for almost 10 years now and still my family wonders why I am not remarried. How could I. It would not be fair to someone that I "love" to put them through what I go through. So yes I feel quite alone. I know family and friends love me. But still after almost 17 years they don't and will never understand fully. Even my daughter and Son who are 20 and 28 respectivly don't understand why I can't even go out to dinner after work or can't stand long enough to cook even a very simple meal. I have to have everything done at home, cleaning, laundry, yard work, haning pictures, everything, even picking up my dry cleaning. Again I am blessed to have a very good paying career and have been in the same business all my life that I can do 80% of it mostly in my sleep(not really). But getting back to being/feeling alone - it is true - I see a cognitive therpist once a week and she finally understands. The night before last after work my boss did not like it because I could not go out to dinner with the whole crew after working 11 hours. I think our disease(s) become psychiatric due to the fact of being alone so much and being sick and tired of being sick and tired, plus neurological etc.
  14. Supermami

    Supermami New Member

    Hi kjm,
    I started taking Nortriptyline (generic for Pamelor), Cyclobenzaprine (generic for Flexeril), and Tramadol (generic for Ultram).

    The Cyclobenzaprine is a muscle relaxant that I can take up to 3 times a day, though I only usually take it before bedtime. It makes me really sleepy if I take it during the day so I only take it during the day if I have spasming or cramping. This is not really what helps me with the sleeping, because everyone here know that sleeping doesn't equal rest.

    The Nortriptyline helps with the sleeping. It is actually an antidepressant. It raises the levels of neurotransmitters in the brain, especially serotonin and norepinephrine. These have a calming effect. People with FMS and others with chronic pain usually have lower levels of these.

    For me, I get to actually sleep now. Before I would sleep but I was in a different lighter sleep. If my husband rolled over, I knew. If the neighbor started their car, I knew exactly how long they let their car warm up. I didn't dream very often either, though that is probably indicating more the stage of sleep I wasn't making it to. Though I really missed dreaming the way I had before.
    I also got up three or four times a night to go to the bathroom. I realize now that it wasn't because I really needed to go, I would just go because I was already pretty much awake.
    The sleep I experience is deeper now. I sleep through my husbands alarm, whereas before I would know not only how many times it went off before he hit the snooze but which side he laid back down on...if he was stuffy...if his foot was itchy, etc.

    I think for me, though, it is the combination of the Nortriptyline and the Cyclobenzaprine that helps with the best. It is a deeper sleep with the Nortriptyline but the Cylcobenzaprine makes it so that if I turn over I don't have to worry about spasming. I also don't get up to go to the bathroom in the night. A good side effect of this sleep is that I dream a lot more.

    I still have a great deal of pain. I still have everything I had before. It is not a miracle.

    I tried to describe to my friend how I felt different with the meds so I explained that it took away some of the background pain. She looked at me puzzled so I eloborated. With FMS you are in pain every single moment of every day but to varying degrees. All of this is still true. How it has improved is more like turning off a fan, you don't realize how irritating it was until it's off. Turning off the fan doesn't make you hear any better, just like a good night's sleep doesn't take the pain of every day away. Sleeping better just reduces my irritability and makes coping easier than treading in chest deep water (while walking on my toes against the current). Now, most days I only tread the water up to my knees.

    I hope you all understood that. Trying to explain how you feel with FMS is a hard thing to break down into black and white text. I'm betting that everyone here can understand better than anyone without FMS what it really means.