I recently discovered that I’ve got fibromyalgia and I believe I’ve had it for years since I was 15, I’m now 19. I can cope with the pain and I’m not on any medication, I just take paracetamol on really bad days. The thing tht gets to me the most the the complete exhaustion and lack of energy, brain fog, memory loss, anxiety and my legs. My legs feel so so weak and lifeless when I hve a ‘flare up’ sometimes I struggle to get around and walk without feeling like I’m gonna collapse. I also have blurred vision and weird tingling sensations in my body. Well that’s pretty much me, I thought I’d introduce myself and tell you a little bit about the symptoms that I suffer with the most. Feel free to ask me any questions, it’d be good to chat to you
Welcome to your new family of friends. I'm heartbroken for you being so young, but I'm glad that you don't seem to be suffering too bad with the pain. Feeling drained must be hard on you with your daily life, and being around your friends. It's really difficult for us to do the amount of things we're used to each day, but we learn to pace ourselves and spread out activities over a week rather than trying to do it all in one day. (Although we still try it on thinking we're superheroes at times and end up with a "bed" day).
Do you do something nice with your days? Have you got some hobbies you enjoy? Do you get plenty of support from friends anf family? Nosey aren't I? lol. Just getting to know you.
Thanks for introducing yourself. You will love this site! They're such great people
Hi Jo thankyou for your comment and unfortunately because I’ve had it so young I lost a lot of my friends ad now just have the odd few, my family are so amazing though and I know what you mean by a bed day! I’ve recently started a job and burnt myself out and ended up having a bed week, doesn’t help having tonsillitus either because being ill has made it so much worse. At the minute im just focusing on working and anything extra is a bonus. What about you? x
Shame about your friends - I've lost a few myself, but we get over them lol. I'm pleased your family are so supportive. It really does help. Are you working full-time or part-time? Just asking because we really struggle working full-time and find part-time better. Although we need the money. We do need to save time for ourselves too. Working and sleeping isn't enough for us is it?
I went back to college when I first became ill and lost my jobs to train as a carpenter and now plumber (boring!! lol) so that I could earn half decent money part-time. It is way too hard at times but I'm a stubborn bugger! I often pass out because of the pain etc but I still carry on. Not smart when using power tools I know. So next month I will be starting a construction degree course, part-time. One day a week. So in a few years, I can get better money without killing mysef and all the cocky tradesmen can kiss my a**! lol!
I'm sorry you have tonsilitis. I used to have that all the time. It sucks doesn't it! I hope you feel better soon, and get some more money in. We've got to get our chocolate somehow!!
I can understand how you are feeling with being so young. I started showing symptoms at 13 and was diagnosed at 19. I'm now 25 so I have been dealing with it for awhile now. I often have the same issues you do with a few others. As somebody that is just diagnosed I would like you to know that you are not alone and there are always people to talk to. I recently joined this group and have found some great friends. I wish you well on your journey through this difficult and trying time. I would love to help you in any way I can. Feel free to message me any time with any questions. I will do my best to help you. If I can't I'm sure there is somebody on here that has some ideas. I have gotten great help!!
I totally understand the work thing!! I am very lucky as I have found a job that I sit most of the time but I'm free to get up and move around when I need to. I do work full time and there are definitely days that it's very hard!! My boss is very understanding about my conditions so I'm able to work around them. I know I am so very lucky!!
Sounds perfect Ducky!
We all know too well of those symptoms so know you are not alone! it can be hard but it will get easier, in a sense. I don't take meds and I deal with the pain without which can be very hard to do but if you can, kudos. . . .take care
Welcome, Melissa, and I'm sorry that at your tender age that you have to be burdened with this illness. As Jo says, I'm glad that you're not too encumbered with the pain element. Yes, the fatigue is exhausting (pardon the pun.) People don't understand it. Sometimes I feel like narcoleptic, ready to fall asleep ANYWHERE. And there's really not a whole lot you can do when you're exhausted... except sleep.
Please try not to feel too badly about your friends. They just don't understand the illness and how could they? It really defies any logic, doesn't it? Especially when you're so young and supposedly so healthy. It's a great big mystery, even to doctors, especially to us.
It seems that the best way to fight the fatigue is to give into it and rest. Because fibro keeps us in pain, and associated sleep disorders keep us from getting restorative sleep, we need more sleep than others do. There's really nothing we can do about it, even if others don't understand it.
Well, that's all I have to offer at the moment. Again, welcome, and I hope coming here helps you to gain a better understanding of what you're going thru.
PS: You mentioned tonsilitis. Did you get any kind of a rash after it, like red spots on your body? Because if so, that can be psoriasis, which could lead to another illness...just asking.
Hi Melissa, welcome, you will find great friends here, and there is care, compassion, and support. Your symptoms sound similar to mine when I was first diagnosed. Exhaustion is one symptom we all have in common. Learning to manage this is difficult but you are in the right place to get a lot of great suggestions.
Hi Melissa! I'm 23 and I think I've had fibromyalgia since childhood...not sure when exactly. I was diagnosed at 16. It would be nice to chat with you as well. Hope to hear from you soon.
Melissa, I understand the losing friends thing. It will happen, especially since we're young, and it's even harder for loud, active, young adults to understand such an illness. However, you will find new friends, and keep the ones who will support you through it all. I wish you luck with this. Also, overworking yourself seems to be a problem for me sometimes too. I've gotten much better at pacing myself and taking baby steps rather than overdoing it. Takes time getting used to these things
Ducky, you're so lucky! I hope I find a job like that. My most recent job wasn't bad -- I was a nanny to 2 girls. I had time to sit if I needed to do so. The job I had prior to that though was awful when it came to having breaks -- I only got 1 break during a 6 to 9 hour shift of being a cashier. I was either standing for hours on end or lifting things and moving stuff around and being really physical when I couldn't do that much...I wore myself out. I look forward to finding another job similar to the nanny job...Hopefully I'll find a tutoring job at school or something :)
Thankyou, I’m just trying to get the balance right at the minute, I don’t have any social life because if I’m not working I’m sleeping. It takes me ages to get over just a cold so this tonsillitus has really took it out of me. I hope Ido find friends that understand. I do hve friends but they don’t seem to get it. My family are amazing though
Though Fibro is a complicated one to treat, please make sure you are under Doctor's care. There are many meds that can help you, no matter if you prefer to go AMA or alternative/holisitc.
If you read Renie's post of all of the fibro symptoms given us by nutty nikki, you will find all of your complaints listed there!
So glad you posted, so nice to have you with us! As our JC says, "stay strong"!
I'm not diagnosed with fibro but Lupus instead and they both carry identical symptoms...this is why it's so hard sometimes for Rheumo's and specialist's to properly diagnose, especially when bloods are 'nt showing anything.
I also take paracetamol like yourself for the pain upto 4000mg daily but after 2000 i'm usually spaced out.
All these symptoms you've described i also get daily.... complete exhaustion and lack of energy, brain fog, memory loss, anxiety and my legs and at the moment my legs are terrible but with all these symptoms daily lifes routines must be paced out slowly because over doing things will double up your suffering.
The tingling sensation is usually based down to the nervous system and regarding your vision i really suggest seeing an optician.
It will be nice getting to know you Terri xxx
I thought that was you! So nice to have you with us, Terri! We always seem to have a few people who have lupus and fibro and some where the Drs aren't sure which.
Terri is our Ben's Friends Lupus moderator, and my personal friend, well, Renie's too! Now I can ask her for help with posts. Fibro and autoimmune are all so closely tied together it helps to inner mix. Renie and I have both moderated on Lupus, I have it in an overlap syndrome diagnosis and they continue to look for SLE to show up in me, but I am hopeful it stays away! I surely did learn a lot about it!
I'm quite new to this site, but not new to Fibro. I've already got lots of tips and help, reading some of the discussions. It's nice to connect with people that understand what we all go through.
My advice about the fatigue, is what my doctor told me to do, and it works for me:
It's all to do with the different stages of sleep, and how much rest your body gets. I can't remember all the info he gave me but basically if you sleep for 20 minutes every 3 or 4 hours it is the equivalent of having 3 hours sleep but without the grogginess. So I set my phone alarm for about 22 minutes, and lay down or sit in a chair, or if you're at work you can do it at your desk or staff room, even if you can't sleep, your body will relax and you will feel rested. You can do it at lunch time or breaks. But the key to it is to get up after the 20 minutes and not to go back to sleep. At first i couldn't do it, I just lay there, but after doing a few days in a row i fell asleep. I often wake just before my alarm goes off now.
This is what I have been doing, everyday at lunch time now for a few years, it really works. When I have a really bad flare up, I do it 3 times during the day, it gives me the strength to cary on with the day to day stuff.
hope this helps xoxo
Yes it me mate.lol...i did laugh when you asked.
Susan it's like i said you've got 2 Diseases so identical it's unbelieveable and the 3rd which matches with them is Lyme Disease also...which i did a Discussion on the Lupus site.
Fibro also gets Autoimmune Diseases link with it and sometimes Lupus.
It's like yourself Susan having fibro then Sjogren's ontop which is an A1 Disease which usually follows with Lupus and fingers crossed for you susan you don't get SLE.
Love & Kisses Terri xxx
Well thats interesting Melissa! I might just try that out myself. It's hard to get back up after a nap but if it works its worth a try. Thanks for the tip I stole lol.