Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
carmelb
Sorry its another of those 'need to vent' posts..but no one else here to listen or understand some of the dark places we get to..
Ive just come back from four days away - invited by an old friend who has bought a property in the country. Her husband was dropping off their grandchild in the city and offered to pick me and my daughter up and take us back for a kind of 'retreat' at their place.
They were trying to be as kind as possible but I just ended up feeling hopeless and guilty that I am not achieving more or getting better.
My friends are both in their 60's now (ten years older than me) and have their own health problems (she has IBS) but their energy levels and resilience put me to shame.
They are getting up early each morning and working hard on their new farm property clearing weeds, planting gardens and chopping wood etc. most of it hard physical work. I felt so pathetic that even just after an hour walking around the 5 acre hillside property (lots of steep, slippery tracks) made me feel exhausted afterwards and I needed to rest. The weather was cold, wet and windy too, so felt worse.
It took me up to two hours to wake up in the morning after sleeping in a strange bed, and having intense back pain and stiffness in the morning.
I just felt so guilty about having Fibro!
My friends were trying to be helpful, but over the years they have made a few comments like 'oh well we got on top of our Fibro by discipline and daily exercise' and 'we all have our health issues but just have to get on with it'
Another case of well meaning people thinking they have 'cured' their Fibro (self-diagnosed) by diet and exercise so think they can tell other people what will help. Of course they haven't had Fibro!
They want me to come back to visit again soon..I am not sure about that.
The worst part for me is not so much the pain (can take pain killers for that) but the terrible brain fog and fatigue. Its getting worse for me and I looked up in my medical notes I was diagnosed 'mild dementia' and mild TBI after the original accident and head injury which started all of this.
My ability to read, remember, concentrate, focus and pay attention to anything is not recovering, and is, it seems, getting worse. Menopause is probably not helping.
My goal these last four years has been to take a CELTA Diploma course in Teaching English as a Foreign language as a way to survive financially as I can not work in an office job any more.
Ive realised now I can't do this. I was trying to tutor private students with English Grammar but they have cancelled lessons because I just can't answer their questions on advanced grammar topics or concentrate enough over the two hours of teaching required.
I am still doing a few hours volunteer work each week teaching Refugees basic English skills, but I can't earn money doing this without a University Diploma in teaching (and its too late for me now - or so it feels)
Feeling so hopeless today Im still in bed after 11am (very unusual for me) and coming to terms with my loss of dreams and goal to move back to Europe is bringing tears to my eyes. This year I am also recovering from the aftermath of a traumatic relationship experience and the shock of discovering my 'wonderful' partner was leading a double life and was a conman who fled the country with the police after him. Its good that I now no longer caught up in his fantasy life and lies, but the loss of my dreams and goals and plans has co-incided with a major Fibro flare and having a formal diagnosis of degenerative disc disease which is getting worse as I age. I've stopped most of my social life and interaction due to fatigue and also the comments people make which can be so hurtful.
Its getting more lonely and isolated every day.
Thank you for listening and being there. I really feel for so many of you after reading your stories.
Ive just come back from four days away - invited by an old friend who has bought a property in the country. Her husband was dropping off their grandchild in the city and offered to pick me and my daughter up and take us back for a kind of 'retreat' at their place.
They were trying to be as kind as possible but I just ended up feeling hopeless and guilty that I am not achieving more or getting better.
My friends are both in their 60's now (ten years older than me) and have their own health problems (she has IBS) but their energy levels and resilience put me to shame.
They are getting up early each morning and working hard on their new farm property clearing weeds, planting gardens and chopping wood etc. most of it hard physical work. I felt so pathetic that even just after an hour walking around the 5 acre hillside property (lots of steep, slippery tracks) made me feel exhausted afterwards and I needed to rest. The weather was cold, wet and windy too, so felt worse.
It took me up to two hours to wake up in the morning after sleeping in a strange bed, and having intense back pain and stiffness in the morning.
I just felt so guilty about having Fibro!
My friends were trying to be helpful, but over the years they have made a few comments like 'oh well we got on top of our Fibro by discipline and daily exercise' and 'we all have our health issues but just have to get on with it'
Another case of well meaning people thinking they have 'cured' their Fibro (self-diagnosed) by diet and exercise so think they can tell other people what will help. Of course they haven't had Fibro!
They want me to come back to visit again soon..I am not sure about that.
The worst part for me is not so much the pain (can take pain killers for that) but the terrible brain fog and fatigue. Its getting worse for me and I looked up in my medical notes I was diagnosed 'mild dementia' and mild TBI after the original accident and head injury which started all of this.
My ability to read, remember, concentrate, focus and pay attention to anything is not recovering, and is, it seems, getting worse. Menopause is probably not helping.
My goal these last four years has been to take a CELTA Diploma course in Teaching English as a Foreign language as a way to survive financially as I can not work in an office job any more.
Ive realised now I can't do this. I was trying to tutor private students with English Grammar but they have cancelled lessons because I just can't answer their questions on advanced grammar topics or concentrate enough over the two hours of teaching required.
I am still doing a few hours volunteer work each week teaching Refugees basic English skills, but I can't earn money doing this without a University Diploma in teaching (and its too late for me now - or so it feels)
Feeling so hopeless today Im still in bed after 11am (very unusual for me) and coming to terms with my loss of dreams and goal to move back to Europe is bringing tears to my eyes. This year I am also recovering from the aftermath of a traumatic relationship experience and the shock of discovering my 'wonderful' partner was leading a double life and was a conman who fled the country with the police after him. Its good that I now no longer caught up in his fantasy life and lies, but the loss of my dreams and goals and plans has co-incided with a major Fibro flare and having a formal diagnosis of degenerative disc disease which is getting worse as I age. I've stopped most of my social life and interaction due to fatigue and also the comments people make which can be so hurtful.
Its getting more lonely and isolated every day.
Thank you for listening and being there. I really feel for so many of you after reading your stories.
My husband had a business partner who fled the country after stealing all our money, so I know how hard and hurtful that type of situation is. We ended up filing bankruptcy 3 yrs ago. Time heals those wounds.
I, too, wanted to go to college. I've had depression for 28yrs and now fibro for 5 years. I had to give up my dreams too. The fibro-fog, pain, and fatigue have ended that for me. I'm 50 now. Not old, but time has passed me by.
I don't know how old your daughter is, but maybe concentrate on your relationship with her. Is it a good one? That will help you to have her by your side. My hubby and kids are my rock.....even though once in a while they don't get the whole fibro thing.
Hang in there. I try reading to keep my mind fresh. It's not always easy, but it's worth a try.
I will never have that much energy again and that makes me so sad.
Take solice in your relationship with your daughter and know that you are important.
I hope this makes sense. It has been a rough day.
Yes, I have two lovely daughters who are my pride and joy. The eldest is very busy with University study so I dont see her half as much as would like to, but my youngest is 15 and a lovely girl. Someone asked me the other day 'what are your plans when Bella leaves home?' and I almost burst into tears at the thought of being left here alone with just the cat (lovely as my cat is!)
I had thought by now I would have been happily remarried and in a new career..to lose everything feels unbearable at times. I enrolled to do the CELTA Diploma at the start of this year but pulled out when I was warned that if I couldnt complete the course due to health problems or didnt pass I would still be liable for the fees and be in debt trying to repay it. Apparently even 'normal' healthy people say its a very tough and demanding course so I accepted defeat and have put life on hold for now.
I read in an earlier post that Fibro-fog gets worse the longer you have the disease? does anyone know if that is true? its feels like this for me. A few years ago I could manage some part time work but now my concentration and memory is getting worse I doubt anyone would employ me. I started a new part time job earlier this year which was a complete disaster. Thank goodness I get a disability allowance now.
Be less harsh on yourself Hun and don't give up your dreams.
Good luck, take care, hugs, Owlxx
We never know what opportunity may come. And let them know aches and pains do not equal Fm and post trauma issues, maybe have them read this forum, a printout, etc. This is a neuro issue, and diet and exercise can only go so far in any illness.
Sending a gentle hug,
Leo
Hurray for the people, like your friends, that can plant the flowers and do everything, but do they ever smell the flowers? You actually took the time to enjoy the farm, to walk the land, to look at the birds, watch a bee pollenate a flower. Did your friends even bother?
Acceptance is hard, and forgiveness is harder, but we don't accept because we are trying to compare ourselves to other people's lives. To what this society considers the norm. We are never going to be able to live the life of before, but it doesn't mean we can't live. I went on vacation to Machinac Island, and I couldn't do all that I once could have done, but my friend and I talked about my limitations, he did his thing, I did mine and we met and did things together. I was a little sad, yet, I also sat looking at the lake on the Grand Hotel's porch reading a book and loving every minute. Acceptance, learning to not to judge ourselves, loving the life we have, and appreciating the small victories. You are sad right now, and life isn't what you have expected, and you are mourning the once was, I understand I am doing the same, but I am also working at healing my heartbreak from this disease and inventing a new life. Because that is what I am being given, the ability to invent a new life. You have two children that love you. And when the darkness effects you it probably does effect them. Seek counseling if you feel it can help, I journal and write my feelings down. But I have two journals one I use to write what I am thankful for and the other to just vent and cry over. It helps because like all of us we are all learning to live a different life. A life that doesn't fit with the society we live in.
Going through the "pause" as my daughter calls it makes everything worse for me. I too find the fog to be the worst part for me. I have misplaced so many things the last 3 weeks and am just now getting my mind back somewhat. I have to say this site has made it so much easier for me, not feeling alone and crazy anymore. I was so very active until 3 years ago when it hit bad and I felt alot like you. I do not have the ability to do the work I used to but I just don't want to accept this as being chronic so for now I am just accepting the limitations it has for me. My heart goes out to you and I hope things start to look up soon
I take Topamax for very intense daily migraines. Sadly, it took whatever strength I had left. I have a lovely husband and daughter but what can they do?
I just wanted you to know you are not alone. Try to keep going. I agree with Ida. It is hard to keep our minds fresh but it's always worth a try!
Its so lovely to have you all here and sharing the frustrations and self-doubts that come with this illness.
Actually, I am never bored these days, despite not being able to "work" in a paid job. I keep very busy with my voluntary work and enjoy being at home (now making and selling handcrafts and repairing antiques to sell online). I've also (very slowly) planted a lovely little garden of blue and white flowers outside my back door which really bring the bees and the butterflies...having time to enjoy that is a great thing and I get so much pleasure out of it.
I'm hoping my eldest daughter will come to dinner on Saturday night too...she is very talented (training to be an Opera singer) and I am SO proud of her :)
Thank you again.