Hello I'm knew here... and I've only recently been diagnosed with fibromyalgia and I'm trying to understand the whole thing. I'm only 16 years old and sometimes find it hard to cope with the pain and the lack off sleep. I was wondering if anyone knew of any methods to relieve some of the pain or to at least help me sleep at night?
I currently take Amitriptyline at 10mg, co-codamol at 8mg/500mg, Ibuprofen at 400mg and have started a course of vitamin D tablets.
I'm so sorry you're going through this. I just turned 18 in December 2016. I got diagnosed this February.
I don't know much about the pain, but I know about the insomnia. I'm on Gabapentin 600 mg/night and it takes me 2-5 hours to get to sleep. It doesn't always work. Last night I was up until 4 a.m. and was stumbling around the house, barely able to walk or have my knees support me. Many times, I almost fell down and hit my head. I started feeling like I was going insane, so if you feel the same, stay in bed. Maybe sit down on the floor and read. I take an atypical antipsychotic which makes me drowsy, but that doesn't always get me to sleep. Don't take one just to get to sleep. I'm mentioning this because some young girls tend to think it's okay to take brain-altering drugs for sleeping purposes if they experience things like I mentioned. It's not a good idea. I got to sleep by engaging in activities that made me really tired and willing my body to stay in one place so I could trick my body. I can't do that last part until I make myself drowsy enough not to feel like kicking off my covers and running through the neighborhood screaming nonsensical things and children's rhymes.
Why are you on vitamin D? I've read that that vitamin helps suppress inflammation. If you have pain your stomach, look at cutting out NSAIDs. Ibuprofen is an NSAID. I use Acetaminophen because almost anything I eat causes inflammation in my stomach. NSAIDs make me feel like I'm starving all the time and give me pain in my stomach, too.
EDIT: I've been told I should look into physical therapy and myofascial release therapy. I've been too tired to figure out whether I'm covered for that, so I can't say whether that works.
Thanks for replying, and I take the ibruprofen because I was given it by the doctors to take when needed. I take vitamin D because I have low vitamin D deficiency again prescribe by a specialist.
I just need to find ways to help me sleep due to the importance of my final year at secondary.
Hello Sally, I'm a 16 year old with Fibromyalgia too. Sometimes when I can't sleep listening to baby Mozart music on YouTube helps. I know it sounds weird, but it works. The trick is finding the right ones though.
Ok thank you I'll try that.
I hope it helps.
When was you diagnosed with fibromyalgia?
I was diagnosed around December I think. What about you?
Only recently actually.
Hi Hidden
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:
I am so genuinely sorry to read of how you are suffering and struggling my friend. Please make sure that you eat prior to takign Ibuprofen as they can burn holes in your tummy otherwise.
One of the things (apart form medication) that I use to help with pain is a TENS Machine. I find it quite useful. I have pasted you a link to the NHS Choices cache below. Many NHS physios can give you a loan of a machine for a few weeks:
TENS (transcutaneous electrical nerve stimulation)
nhs.uk/conditions/tens/page...
Amitriptyline contains a sedative and should help you sleep, if you are still having problems I would talk to your doctor about this as your dose is quite low and it can be increased if your GP thinks you are suitable. I want to sincerely wish you all the best of luck and please take care of yourself my friend.
All my hopes and dreams for you
Ken
You are so young. Poor you. Ive had it 12 years plus, im in my 50's. I found that i needed to manage my medication so that it worked for me. It took me a long time,nsome days have been worse than others. But i take lots of medication to help. I take gabapentin 900mg, dicofenic 75mg, paracetamol 1000mg and a stomach protector in the morning, the same in the evening except the stomach protector. As a relaxant i use amitriptyline 20mg to help me sleep. I go to the gym, but do light exercise too. It takes time to find what is right for you, good luck and i help ive helped in someway.
Thank you for replying and I've had a lot of people tell me that light exercises can help. I do exercise from my physio however sometimes when I do some light exercises I find I'm in pain that day or in later days to come, have you found and specific exercises that help which don't cause a lot of pain?
Hello and welcome to our friendly fibro forum.
You are young to be diagnosed with fibro, although as you have seen, it is not unusual.
I suggest you Google the "Spoon Theory" which will help explain pacing yourself.
Do have a look at our Mother Site fmauk.org you will find it very informative.
Hope to see you joining in around the forum.
Kay X
Hi Sally, it's horrible not being able to sleep...I agree with Ken you are on a low dose of amytriptiline and if you explain to your Dr what you have told us he/she might increase your dose...you need your sleep with your exams coming up as well. Other than that relaxing music which has been suggested..also sleep CDs or downloads can be very relaxing and help you get off to sleep. Good luck and gentle hugs xx
I found that less intake of sugar help . I also found a diabetic neuropathy foot cream helps some too and you can get it at Walgreens. It's called magic life and you can use it everywhere externally. Also I make a bath soak out of Epson salt, eucalyptus oil and ground mustered. Help with the pain and sleep. But I also made a pain rub and when they rub it on my back at bed time and rub it in good, use heating pad I sleep a little more at night. I hope some of this helps you, but remember not everything works the same for everyone. You just have to try different things until you find the right remedies. Good luck and I will be praying for you.
I've noticed cutting out sugar and limiting bread has helped with my pain.
Hi sally , I do empathise with you and your so young as well, I have had fibro for 16 years, , it can take a while of trial and error to get the right meditation that works for you, it took me a while to get a combination of medication that gave me some quality of life back.
I find heat pads are good to help with pain also i use bio freeze gel sometimes for my knees and back , a lot if people are talking about magnesium supplements and epsom salt baths just now, I am sure that you will get lots of tips here its a very frendly site and not always serious you can have a good laugh as well sometimes thatis better than any medication.
At least here we understand what you are going through and you dont have to try and explain it as you fo to family and friends as its difficult for then to understand as they cant see it.
I hope you get some relief abd restfull sleep
Take care
Loraine x
Thank you for your reply, and I'm glad that I found this site because it's helped me see that others suffer from the same symptoms and I get to see as well as learn different ways people handle the pain.
My only problem is that I find it hard to sleep at night sometimes and this can happen even when I'm not in a lot of pain however I have the constant ache throughout my body and it can keep me up. I'd love to get a full night of uninterrupted sleep as I find it hard to go through a whole day without falling asleep or become seriously tired. This isn't helpful when I need to be in school as this is my final year.
I do sympathise with you sleep deprivation is a nightmare and im afraid its one of a list of things we fibro sufferer have a lot , you will normally alwsys find someone on the site no matter what time it is,
It must be really hard for you to study with all this going on , its the last thing you need when you are studying at the same time, you will find ways of doing things differently, has anyone mentioned the spoon theory to you it help you to understand pacing yourself, look it up, I have been looking at it just recently, there are always new things that people find that wirks for them and we share them eventhough we are all different and not everyone is the same so not eveything works for you it unfortunately a case of trial and error, I am still learning and that's been 16 years, when I was first diagnosis tgere wasn't much sites , I used to only us an American site it was really good but eventually I stopped looking for ways to help i just went along myself trying to cope it was only at tge end of last year that I found this site and its been the best thing i have done in a long time, I dont use social media as alot of the time i am not up to reading or writing so i keep way from social media as people get annoyed with you if you dont reply, lol at keast here you can join in or just read others posts, as you will be aware it hard to concentrate on things and fibro fog is a nightmare i forget words and phrases, I know what i mean but sometimes I just forget the words lol
I do hope that you get some helpful tips here,
Do you have a good doctor or consultant that understand how you are .
Wishing you a pain free day as possible
Loraine x
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I have physio and just a general GP I've spent a lot of the past 3 years in pain and only a couple of days ago was finally diagnosed with fibromyalgia.
I find it hard to be sat down for long periods of time however I also find it hard to walk sometimes so I was given a crutch for support. I also get seriously bad back pains and sometimes get loss of feeling in my legs is this normal for someone with fibromyalgia?
Hey sweetheart hope you’re doing okay!?
I use a crutch everyday and have an amazing purple one with metallic detail on it. So you don’t need to be stuck with a boring grey nhs one!!! It’s called a Funkrutch I can send you the link if you want?
I’m 29 and was gutted when I realised I needed something to help me walk and especially the grey nhs crutches don’t match many outfits lol 😆 So there are lots of funky things out there for us!!
Jen 🤗
Hi sally unfortunately it is yet another symptom of fybromyalgia, sometimes my feet go numb and I cant stand up as I fallover , it been happening a lot lately, I have 2 cup had walking stick as I used to only use one and the next day i would be in agony and have to use the other hand so I was advised to use both to even out the weight evenly
It will take tine to get used to finding ways around things for yourself but dont be to hard on yourself, have you had a look at the spoon theory online its helpful,
Take care
Loraine x
So do you think it's better to use two crutches instead of one? because sometimes I do then suffer with pain in my shoulders and wrists from having all the weight on one side.
Hi Hidden
I was diagnosed in my late 40's and have only just started to 'own' my FB. Denial, anger, sadness at the daily pain, and harder is the bigger picture on loss of a mobile life.
Things I know now
1. FB stops you sleeping, lack of sleep makes FB worse. Tackle this as quickly as you can. I have been on Mirtazapine for over a year, and I know that within an hour of taking it I will be asleep and stay asleep (sleepio.com/articles/sleep-.... 30mg is the balance between helping low mood and sedative. I can honestly say this one thing that has made a real difference.
2. Get your thyroid checked out and look at thyroiduk.org.uk/tuk/about_...
nhs.uk/conditions/underacti...
I take Levothyroxine medication daily which lifts some of the fatigue , and I am now exempt from prescription charges.
3. Persist until you get referred to a pain management programme, to try out TENS and acupuncture. A watershed moment was when the doctor was just so accepting of FB, felt a weight lifted off me.
You are not alone.
Jules
Gabapentin - for sleep not pain?
sleep problems and pain
Still wide awake omg sleep I need sleep !!!!!!!!!!!!!!!
A lot of sleep (Fitbit)
