I have never posted here before so this is all new to me. I need help, I need somebody to talk to who knows what I am going through. I need advise of how to keep moving forward, I need help to push this depression. I am on strong pain killers but i don't feel like any are helping at all! They are just making me put on weight and making my skin horrible! Working is killing me slowly, doing 9 hour shifts with no proper break.. Is just making me worse, I come home with a migraine in agony can hardly walk, even moving hurts. Im just not sure as to what I can do anymore, I keep pushing on wanting to go for a walk wanting to do push ups and sit ups but realising i just can't do any of that anymore as it hurts me more, I can hardly get out of bed on my own without my boyfriend helping me. How does anyone leave their lives with this horrible condition, I just wish it would go away.. I am 20 years old and have no life!
I need help?!?
My family and friends are brilliant at TRYING to help.. But the truth is no one actually understand what i am going through. I want to be able to go out for a walk with my dog and not think am i going to over do it? I am so sick of RESTING, I am so sick of being in pain, I am so sick of not living my life. I don't want to take it easy i just want to LIVE...
I am sorry to hear how much you're struggling ( not surprised tho', this is a tricky condition which takes no prisoners). I am sure people on here will give you great advice about how they cope, and there are lots of us here who do lead fulfilling lives. My heart does go out to you, as you are so young, but you can do this! Still working and trying to do the things you enjoy show me you are a strong person!!! Gather family and friends around you, let them help you, they may not fully understand, but there are articles on the web that may help them to.
I see you are from Devon, I am UK also, Hampshire. I wonder aboutthe support you receive from yor Doc, if you are on strong painkillers and still in a lot of pain you need to go back and talk about different Meds and different ways of managing this. I do relaxation, Mindfulness, Tai Chi, gentle exercise as well as pacing myself. I don't take any painkillers as, like you I found the side effects difficult to live with. I urge you to discuss all this with your Doc, tho'. Let us know how you get on.
Hi. I just stopped by to say hello to you and that I am thinking of you and sending you good thoughts . I do agree with what Anne told you as well .
HUGGGGGGGGGGGGGS
Suzie
I agree it may be time to speak with your doctor about another treatment plan and to rule other causes out. How old is your mattress? I was having horrible trouble of a morning and bought a new mattress and pillows and it helped some just a thought.
At the top of the page, on the dark purple band, click on the category "Groups" There is a group for young people with fibro so that you don't feel all alone in this new world that you have been thrust into. M
Hi Gina! I'm so sorry that you have fibro. It can be a real monster at times, especially in the beginning.
First of all, most of us here are on meds that turn down the severity of the nerve pain we experience, as fibro seems to affect our nervous system. And regular pain killers don't seem to help with alleviating nerve pain. The meds that turn down the nerve pain are Lyrica, Cymbalta, Savella, and some cousin drug of Lyrica, whose name escapes me. If you are on one of these drugs,i t's possible that you might need an adjustment in dosage or even other drugs that can be combined with it. I am no doctor, just stating what limited info I know on the matter. Really, the best idea is to see your GP or Rheumatologist for more help.
I am going to include an insightful piece on how you and your friends and family can think in terms of what fibro is really like to have:
Thank you so much for your reply sorry I have taken so long to reply. I am struggling so much.. I think the worst part is when i realised this is not just an illness which will go away it will be here forever. I really need some help from people who understand me and what I'm going through. I was always very fit and healthy growing up, I used to horse ride, run, bike ride, everything, It hurts so much knowing I can never do that again as it hurts too much. I feel like all i am doing is fighting against my own body constantly which is starting to take its toll.
I really want to try Yoga and Tai chi to try and let me feel like i am still able to do something. I did hypnotherapy for a while which did help me see more of a future with fibromyalgia, but I still keep over doing it and being in complete agony and not being able to get out of bed on my own, trying to find the right balance is difficult. I hate pain killers I feel like they are causing me more trouble than without, It's really good you don't take any. I take vitamins and a lot of them every morning which have really helped my immune system, so I haven't been getting as many colds and viruses which is good as they always make me 10X worse. I will go into more detail with my doctor and see if there is anything else I can try. I am going to be starting physiotherapy soon for my knee, But really scared that will overdo it for me and ill be worse off.
I think I am going to have to. My mum recently treated me to a new mattress as I was so uncomfortable every night waking up in pain every hour.. Which was horrible, I still wake up a lot through out the night not being able to get out of my bed on my own, which makes me feel trapped. But it has got a little better since getting a new mattress :) Thank you for the advice think I may get some new pillows to see if that helps at all. Thank you
purplebutterfly said:
Hello
I agree it may be time to speak with your doctor about another treatment plan and to rule other causes out. How old is your mattress? I was having horrible trouble of a morning and bought a new mattress and pillows and it helped some just a thought.
It really can be it's horrible, Trying to figure everything out and trying to find a balance for everything is difficult.
Thank you for your advice and help I have read the information you have given me, I am not on any of those drugs they are different to that. Not sure on the names at the moment, Are you from the UK?
Thanks again!
Gina
Petunia Girl said:
Hi Gina! I'm so sorry that you have fibro. It can be a real monster at times, especially in the beginning.
Hi Gina - I'm 40 now but my fibro started when I was young too, in my teens. It didn't become completely disabling until my late 20s but even then it was difficult to accept how much of my life was being taken away. It's not fair and it's okay to feel sad and angry about it. We all have to feel that way sometimes.
If it helps at all - it may not always be as bleak as it feels now. For one thing, you can find different treatments and end up with a good combination of medications, exercises, alternative therapies, etc, that work best for you. We're all different so it takes some time to find what works best for each individual and not everyone gets the same results but it is definitely still possible for you to find some better success with treatments than you are getting now.
Secondly, they're still learning a lot about these conditions and with more research may come better treatments (or can we hope maybe one day a cure?), so that is something to look forward to. Also, some people do experience periods of remission where they are able to become more active and feel less pain and other symptoms. I know some people who have experienced that, and while it's not super likely, keeping that possibility in mind helps me to cope some days.
But mostly the hope I can offer is adjustment and acceptance. All that you mention about pushing too hard and trying to find balance is stuff you can learn over time. It's not easy, I won't lie and say it is. But with the support of your loved ones and health care professionals, you can get through this and find ways to get the most of your life as it is now. There are some things you just can't do anymore - but there are other things that you can find accommodations for and learn to do in different ways. And there are new things you can take up as hobbies that you maybe didn't take interest in when you were able to be more active but that you will find interesting and engaging now.
I know it sucks when you want to be out in the world doing things and not resting and taking care of yourself. And there will always be days when you're depressed and/or angry about it. There's no way around that. But you can get to a place where those days are fewer and farther between.
One thing you might want to look into are adaptations and accommodations for folks with disabilities. For example, if you're having trouble getting out of bed on your own - there are probably gadgets and tools out there to help with that. It might feel depressing at first to think that you need them - but using them can help you feel and be more independent. I just did a quick google search for "disability aides getting out of bed" and a bunch of items popped up - so if you're feeling up to it, that might be something you can look into to regain some of that independence!
I am so sorry you are having such a rough time at such young age. I am 45 and at this point little easier because I am no longer working. I have almost put back on the weight I lost took my long time to lose. I try do things.
I wish I had some good advice for you. I have tried a lot of things
Have you tried taking an Epsom salt bath when you get home from work. I use the lotion taking too many baths I get UTIS
I save the baths for bad migraine and pain days.
I know they helped me a lot.
Hope things do get better take care maybe try see if you can talk to someone at your job about being able to take a break once in awhile