Hello all. I joined this group awhile a go, and have not, until now, posted anything. I've reached the point were I feel I need extra support in my life.
I was diagnosed with Fibromyalgia over a year ago, although I have had all the symptoms for years. I also have back problems. I had to give up my business of nearly 10 years, as the pain became unbearable, and the chronic fatigue took hold of me.
I am lucky that I have a mum who understands my illnesses, but my partner and son don't really get it. Don't get me wrong though, my partner is amazing at caring for me. He does a lot of things for me, when I am unable to.
No one knows how lonely and desperate I feel though. I am dealing with pain daily, being housebound and the grief of losing my wonderful dad. At times I feel that there's no point to life anymore. Is this my life? Pain forever? I'm still young, I want to do things, but this syndrome stops all that. It's too painful and tiring.
I'm sorry you've found yourself in this place. I know it's hard to see anything good when your so deeply buried in the sh*t. Life is full of wonderful beautiful things and you deserve the joy of living and experiencing all those things. Don't give up hope on life.
Fibro is hard to understand, it's like trying to explain color to a blind person. My husband tries and my kids are too young to try to explain it.
I like to escape through writing, studying different philosophies and psychology. I love music and singing, though tight throat muscles have reduced my amount of singing, though I'm sure my kids are happy for the break. I also homeschool, which is quite the experience and exhausting at times but they are young and I try to let them do things at their pace so both of our stress levels stay low. and I have begun incorporating yoga and other calming mindful practices, which helps my son who I am pretty sure is adhd.
Pain forever? Noone can truly answer that yet, hopefully one day there will be some cure or solution. Mine comes in waves, well there is always constant pain and such but the really bad is on and off. I try to fight it the best I can, but I haven't figured it out yet.
I wish you all the luck. Keep explaining to your son and husband. My husband is the one who said the explaining color to the blind comment to me the other day. So it's not easy even when they try to understand.
Your not alone.........most of us feel alone as no-one who doesn't have fibro can understand all the problems we have to cope with each day. I only started my 'site' today and have had a couple of lovely messages. As they told me - you can rant and moan to us as we understand the frustrations of not being heard or understood by people close to us. My heart goes out to you on losing your lovely dad.... I bet he's looking down at you and thinking....'please don't be sad, you cannot see me - but I'm here by your side and want you to remember all the good times and smile at those memories. Your mum sounds lovely too. Take care and here's a big hug for you both. x
Welcome to the forum Today you have just made yourself a whole lot of new friends.
We all understand how you feel and will do our best to support you.
I am sorry if I am pointing out the obvious, but have you been to see your GP for a medication review?
Whilst there you can ask for a referral to a Pain Clinic and a Pain Management Clinic. The first clinic deals with medications and the second one helps us to learn how to deal with and manage our pain.
If you ever feel the need to speak to someone in person there is always the Samaritans. You don't need to be suicidal to call them. Please don't be offended, but here is their number:
Hi I'm literally brand new to this site and after some advise. Cloudgirl41 I totally understand how you feel and can relate so much even tho I haven't been diagnosed YET! With fibromyalgia the more I read about it the more I believe its the condition I've got.long story short for over a year on and off I have been getting a dull aching sensation under my left nipple and severe pain under my left shoulder blade.but from June the 3rd this year I woke up with these symptoms and the have never left me to date and have made me unable to go about my daily activities work etc. Since June I have also had 12 attacks by which I mean I suddenly become more unwell than normal the pain in my chest gets really tight the pain in my shoulder becomes unbearable sharp pains across my chest,neck pain,throat pain,really hot and clammy,fever like,can't keep my legs still,left arm feels really heavy. And I don't always get the same symptoms every attack!..oh and waking up in the middle of the night sweating has become normal to me now. I haven't worked now since may in fact I don't leave the house anymore unless I'm goin to the hospital which I have been to 12 times and every time I have been told different things.at first I was told I had pericarditis and put on anti inflamatories I have also been told it was just a case of overheating.some times Im sure they think I am making it up and like having days out at the hospital. Bloods and X-Ray's have been done on every occasion and came back ok.At one point I was put on steroids to treat pericarditis.it was only on the second to last trip to the hospital fibromyalgia was mentioned.i am having an mri tomorrow and have had an eco off my heart which was fine.it has totally crushed me I was a highly active outgoing type of person until May this year.now I am a nervous reck! Does anybody else have similar symptoms? I've give up on the nhs just hope my mri shows something/anything as I just want to be well and able now.....
Welcome to the site, Garyb12, I think you'll find a lot of very friendly and supportive people here. In your many hospital trips, has anyone mentioned panic disorder? My brother (also named Gary, btw) has these regularly and they sound very much like you describe. He also went through a period when he wouldn't leave the house for fear of having a problem in public. I've had two attacks while taking high doses of steroids, and can confirm that they are extremely uncomfortable and frightening. If you're interested, you can find some information here and then talk to your doctor about it: adaa.org/understanding-anxi...
I hope you will soon be able to get to the source of these health problems, it must be awful not knowing what's going on so you can begin some form of treatment. Good luck, and please let us know how you're getting on.
Hi Cloudgirl, welcome to the forum & if you have been watching, you will already know that we all support each other & understand because most of us have been on this part of the journey.
I do feel for you, its so hard when you are trying to juggle family & Fibro.
I think naturalnikki has said it all really and can't add a lot to it really. You will learn to live with it and adjust eventually, although it may not feel like it at the moment
Welcome Cloudgirl, many of us can empathize with the despair you're experiencing. It seems that depression is a common companion to fibro, and if you are still dealing with grief over the loss of your dad, and maybe even the loss of your business, then these things are adding to your burden. I'm so sorry you're feeling hopeless, but thank goodness you have the support of your mum. If your partner is like my husband, he'll adjust and become more supportive as he learns more. It helped when my husband talked to a doctor about my health issues, and also he learns a lot when he goes with me to some doctor appointments. The others who responded here have given some wonderful advice about things to try, I would only add that a grief support group might help you to better cope with the grief and other emotions connected to your loss. Sharing your feelings of loneliness and your frustration about living with pain on this site may also help to lessen the intensity of those feelings and allow others who understand to offer the support you need. Gentle hugs, and please let us know how you're doing.
Welcome to the forum and it is wonderful to make your acquaintance. I have read your post with so much pain and sorrow and my heart truly goes out to you. I can see that (Lu) BlueMermaid3 has given you the telephone number for the Samaritans and I would implore you to ring them if you ever felt the need to physically talk to another human being about how you are feeling.
I want to sincerely wish you all the best of luck, and please take care of yourself.
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and I have begun incorporating yoga and other calming mindful practices, which helps my son who I am pretty sure is adhd.
im giving up the fight
I give up!!
I give up!!
