Hello everyone my name is shar and I am 24 year old and from England Somerset. I have struggled with pain in all of my joints and back since I was 13. I got told for ages it was growing pain and there was nothing they could do. I kept going back and seeing different doctors but none of them would help me. Finally I moved and found a doctor who would help me. He sent me to see a specialist on 6/2/15 who confirmed what my doctor thought and said that I have fibromyalgia. However he was unable to answer many of the questions I had, so I still feel lost. I’m 24 but feel like a 60 year old I really struggle everyday. I’m hoping you guys on here will be able to help me/support me
We have several members from England. Firbro 101 has some good information. I am glad you joined our group.
I'm 27 and I have Fibro as well as Arthritis. I'm sorry you are going through a tough time right now. I completely understand the feeling of being young, yet feeling so old. That is how I feel daily. This website is great for support, advice and information : ) It sounds like you have been struggling with this diagnosis for a very long time. I was diagnosed in 2010. I can't imagine having this diagnosis as a child/teenager.
Looking forward to getting to know you.
Thanks, I’m looking to talk to anyone on here, doesn’t matter how far they are. And ok thanks il check it out
I am struggling more the older I get and something’s just don’t make sense to me. I have done a lot of research on fibro and I still don’t really understand it. I personally think there is more to my diagnose but trying to get doctors to look in to it is hard. I’m just wondering if you or know anyone eslse who has this diagnosis who’s joints click/ crack and come out of place easily? And who tears their ligaments and tendons easily? I am for ever in hospital because I’m tearing them and I dont have to do much to do it.
I’m sorry to hear that you are also going through at a young age and thanks for the friend request
Hey Shar, I started typing this long post to you (as I tend to do) but I’m not inclined to do that right now. It sucks getting the diagnosis as there is not “official” treatment for FM. I don’t know how they treat FM in England, but as you know “big pharma” is a “thing” here in the US. I am 36 from California. I started showing symptoms in "07, and diagnosed in "09. In that 2 year span they didn’t know what it was. I always got headaches since I hit puberty but than all of a sudden it turned into un-treatable migraines, body and joint pain, etc. My doctor said it was because of my job as a Respiratory Therapist, on my feet for 12 hrs a shift will to that to you. He finally diagnosed me in "09. After trying several different meds that might work and narcotics in between for pain mgmt. I finally settled on Lyrica, got off the narcs, and made different lifestyle changes such as exercise regularly, go gluten free, try and be active even if you feel like crap, force yourself up!!! You will find what works for you. There’s no cure and official treatment but eventually you will find what is best for you and get a system going but ABOVE ALL, “STAY AWAY FROM THE NARCOTICS”!!! It wont do you any good. It will make you feel good for a lil bit and than before you know it, you are taking more and more before you are completely dependent on it. DON’T GO DOWN THAT RABBIT HOLE!!! I hope I’m not scaring you, I’m just trying to give you the info I never had. Good luck Shar!
No your not scaring me haha. Over here they treat things the same as in the usa. So far over here I have been told there is not anything that they can do for me but put me on meds, I’m currently on gabapentin but unfortunately it doesn’t work. They tell me to keep using it. They mainly put me on it so that I am able to get out of bed but unfortunately most days I’m still stuck in bed as the pain is to much. I try to walk as much as I can put just walk the size of a football pitch kills me and I have to stop and rest. I guess by narcotics you mean marijuana or something like that, over here they don’t actually give that out as its against our laws, I tired it when I was younger and it helped me loads but now I’m older there is no way I would touch it again.
Welcome, I’m also new. I’m in a very small town in Texas. I am looking for friends who can relate to how it is to try to live a normal life with this Fibro. I am 46 and feel 90 most days. I began Savella last week. I am feeling better and I am not on a full dose yet. I don’t pretend to understand Fibromyalgia just know I have it.
Maybe we can talk more in private messages at some point and help each other. Fibro is so hard to understand, over here I’m classed very young to have it and they say it’s all in my head. I am jealous of everyone in America you seem to get all these different meds that England don’t proved. I’m struggling so much lately. I want to be able to work but with this pain it doesn’t seem likely.
Hey Shar, Hey Jeanne, I know that getting the diagnosis is hard. When I was first diagnosed I ask my doctor, “ok, how do we get rid of it?” He looked at me and said, "you can’t " There might be some meds that work and some that don’t. It depends on once you get up to a therapeutic dose of what ever med you are on if your body likes it or not. I have been on Gabapentin, Cymbalta (im allergic), Sivella (made me severly nauseated), cylexa (didn’t work), and now im on 100mg of Lyrica three ti.ea a day. Its still not therapeutic but I have to be careful, as my stomach is now hyper sensitive because of all these meds. When I say narcotics, Im referring to prescription narcotics like vicodon (hydrocodone), or Oxyconton, methadone etc. Medical MJ is too controversial here, and because of my profession, I absolutely can’t do medical MJ, but all those prescription meds are perfectly acceptable. Go figure! I was saying to stay away from all of it. It dopes you up and before you know it, you don’t recognize yourself anymore. I know its painful to get up and move. What I have been doing is take a hot bath, if you can’t get in and out of the bath, take a hot shower. The heat will loosen up your muscles. Stretch your back and neck in the hot water and loosen yourself up. When your done, Im sure you will be exhausted, but dont sit for more than 5 mins. If you sit for too long, you will stiffen up. Just try to keep yourself moving and when you get tired. Take that break allow it all to relax, its gonna hurt to relax but unfortunately, it is what it is. I usually wait till I pick up my kids from School and have dinner made. I know you want to lay down, but I have found that you just have to keep yourself going. Stretching is a big thing too. If you try to keep yourself limber you wont tighten up as much. But thats just what do. As for a private chat, I’m not really sure how to do that on here. I Don’t if we can do that on here.
Welcome to our family, Shar.
Thanks for introducing yourself. There is a Young Adult group here on the site as well. Take a peek. It must be difficult being so young with Fibro. Stay strong! Better days are ahead.
Thank you for the tips. When I am able to get up and do things I end up over doing it because I feel ok. Unfortunately I don’t have a shower so I try to have a bath as regularl as I can but sometimes I have to wait till I see my boyfriend which is 3 times a week. As he has to help me In and out. I think you can if you click on the persons profile underneath it says message, so I’m guessing that’s private
Ok thank you, i will check it out
hi Shar . I just stopped in to welcome you, say hello and send you
Hey Shar, Well I have been responding from my phone so I guess it doesn’t give me the message option. I am so sorry you are having such a hard time of it. I am fortunate that I have my family here with me. I sincerely wish there was a way for you to get around all these obstacles. FM is a truly heinous condition. It robs yiu of you way of life, your energy, your dignity and your self respect. At least that’s been my experience. It’s been 6 yrs since I was diagnosed, I went through a rough couple of years. Depression has been a big problem for me. Mostly because I have had to stop working and go on disability. that left me with being unable to make my own living and support my family, way too much time on my hands and focused on pain all day every day. You can only lay in bed and watch so much TV before you say “enough”!! So I stopped taking the pain meds, I kept on a strong regemine of my Lyrica and I try to do something every day to keep my strength up. My husband says I’m my own worst enemy, and he was right. I was too busy wallowing in my anger that this happened to me, my frustration over the pain, the fact that I can’t work etc. That it brought me low. I stopped talking to friends, stopped doing things I loved and even shut my family out. I recently decided that I couldn’t live like this anymore and I figured I was just stubborn enough to fight it. Not deny that I have it, just do what I need to do to make mine and my families life easier and to just adopt a different mind set, but that’s me, this is easy for me ti say. I have has 6 yrs to work through it. Not saying it will take you that long and you will have your own way of dealing with it, you will find what works the best for you.
Hello to you to and hugs back
I understand what your saying, I have had a mental health problem since I was 8 years old and I’ve finally just got it under control. I have been dealing with this pain for 13 years so I have may own little ways in doing things already. Things are just getting worse at the moment. I’m at that point where I have had enough of all of this and just want to be '‘normal’
I know exactly what you mean by wanting to be “normal”, and wanting my old life back. I haven’t had symptoms sunce I was a little girl, but I started getting terrible headaches once I hit puberty. Advil was a constant presence in my purse. I didnt dare leave home without it. I hope things get better for you. I have been on the uptake lately so its easy for me to be positive, but the minute a flare up hits, I’m down for the count.
I am also in England, Hampshire, so not too far away. I am a little bit older than you (well a lot really, 30years). So really feel for you being so young and having to cope with this. I have worked out that truckloads of pain meds are not the answer, tho'. You take them and are still in pain. My Doc will only prescribe Amitriptylene, more for sleep than pain. Other things to try are pacing yourself, relaxation and some peole find aqua therapy helps. Good luck and stay strong.
Take care, Anne
Nice to meet someone else who is from england lol. I agree meds are not really the answer I try to take them only when pain is unbearable, but my doctor still won’t give me anything to strong. Main reason I want some decent meds is so that I can get a job and stuck and it. I must admit I do struggle with pacing myself, I’m hopefully going to start learning how to swim as I have read that can help.