Been diagnosed with fibromyalgia 17 years old

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Hi all.

Some people have told me to keep in touch about this. Finally I can stop thinking it's all in my head. For the past 4 days I've had this horrible pain in my ribcage which the doctor called a trapped spasm in between my ribs. My mum mentioned fibromyalgia because the other gp I seen who was meant to be referring me to rheumatology didn't bother to even do it. He told me to stand up and began pressing down my back without even taking me jumper off I hit the roof at every single touch and I was crying too. He said I don't even need to see a rheumatology because he can tell just look looking at me. I also have joint hypermobility syndrome which he says is responsible for the cracking my bones make every 2 minutes.

Some of the symptoms I experience sever fatigue at the slightest activity and constant unrefreshed sleep. Pain in neck radiating down arm. Stiffness. Lower upper back pain, hip pain, burning sensations going down legs, painful feet, headaches, tingling in forearms. Tingling in legs in bed. Trouble getting to sleep. Bad short term memory. Social anxiety and depression and don't forget very sore to touch (white fingerprint on skin pressure) and that's basically everywhere on the top half of my body and my thighs. Fluctuating bowel movement.

I'm just looking for a bit of advice as to what you guys have done for self help rather than taking medication? I have heard vitamins ect are good? I am currently on amitriptyline, tramadol, dihydrocodiene and robaxin.

Any help would be much appreciated you are all such strong people. Ps sorry for such a long message just want to not feel pain for a little while

Thanks

V xxxx

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6 Replies

  • Posted

    Hiya Victiria, really feeling fir you Oreciius,,you are sooo young....I've had Fibro for over 29 years..and it was my research that I ended up taking to my doc that finally made him send me to a Rhumo...I was diagnosed really quickly by him then,,,too much suffering for far to long, before diagnoses, no wonder we get depression and the rest..yes unfortunately most of us with Fibro struggle with Cronic  fatigue..that's why less stress and lots of sleep..helps us so much..I am on Amitiptilyne too 25mg at night..that's all I need...I get a really good sleep too...so everything the next day us copeable..ut wasn't always that easy though..it did take a few years to get on the right end fir me.,as is quite usual for us all..vitd3 and magnesium double rec.dosage..are great too..I still take them 22 years down the track...there is light at the end if your hirrid trouble...it dies get much better...flare ups can be horrid..but it's better than constant...keep posting. We all love it..remember we are not alone...be blessed, have a great day..:-)xxAustralia 

    PS..lots and lots of hot water bottles are amazing too..

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  • Posted

    Hello Victoria,

    I was so sorry to hear that you have been diagnosed with Fibro.  My granddaughter is 18 and has also been diagnosed with Fibro.  It seems to run in familys.  I have Fibro, my daughter has Fibro and now my granddaughter.   

    I am going to ask Carla to get in touch with you as you are similar ages.  This might make you feel that you can talk to someone of your own age, this might help you.

    Love to you, and Big Hugs  (but not too tight)

    Jeannette xxx

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  • Posted

    Hi

    I am only 19, I have experienced many of the same symptoms as you for around 4 years now. Everyday is different and there's always something that aches! On worse days I am in agony!

    Like you mentioned I have recently started taking vitamin D tablets etc, I also use heat patches! It's been recommended to me to things like swimming and yoga as they help with stiffness.

    I really feel for you!

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  • Posted

    Hi guys

    Thank you all for your responses it's really appreciated. I have ordered loads of the vitamins u mentioned online now just waiting for them coming.

    I am going to try getting into swimming again it seems like it would be quite therapeutic too. I try to walk the dog most nights too but the past few days I have barely managed to make it to work.

    The doctor said after diagnosing me yesterday I have a trapped spasm in between my ribs. Don't have a clue what this is but it feels like something is stuck in between there and it needs to pop??? It's a deep knawing like pain I haven't slept in 3 days I have muscle relaxer and tramadol and nothing is even dulling it down!!!!

    Have you guys experienced this before? If so how will I persue getting rid of it because it's really getting me down dr just said take these and gave me a Physio card. My pyhsio when I went for joint hypermobility syndrome said to just give her a call so all that's sorted out.

    But whatever this is inbetween in ribs is constant and doesn't even die down or the tablets don't even take the edge off (question my mum keeps asking 'surely your medication must take the edge off') but nope it doesn't!!! Really stuck here ladies any ideas???

    Lots of love you are all such strong people xxxxxx

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  • Posted

    I feel your pain and I don't know where you live but I am in Michigan in USA. I have had this diagnosis for 4 years plus and it all started after a surgery. You are so young, I know the pain in your chest area is probably the chostochondritis because I have been to ER 3 times thinking I was having a heartattack. I was just there last month and very frustrated, told me they couldn't find anything and follow up with my doctor. What a joke the health care system in the USA is especially since we have had a change of presidentcy over the last 6 years(?). We pay more for everything because of the situation!! I am currantly on Norco, Neurontin(Gabapentin), Valium, Parafon Forte, Xanax(anxiety and when the nerve endings won't stop firing and I can't take another pain pill), Fioricet and then Imitrex if that doesn't work and then I include the nausea also. Who remembers what else!! I have tried so many things but haven't had a lot of success. I have done therapy pool, do heat packs constantly, light exercise at home and now going to do low impact yoga from lady that donates her time with people like us! I am now having trouble with my fingers and my feet, I say be positive and keep searching for answers no matter how frustrated you get. We have to be our advocates for our own health. My doctors surely aren't worried about my pain because they don't have to go through what we go through everyday or should I say every second of a day. I have been to the Rheumotologist but this last time I felt brushed off when I said apply for disability, sadly I have worked 42 years of my 60 1/2 years of age and before that from the time I was ten took care of the house and my baby brother and babysat for others. I have never not been doing something. They don't realize how much my pride is in the way, I wan't to work till I was 62 but my body couldn't.

    I hardly ever sleep, usually up every hour heating up heating pads and can't sleep on the expensive mattress we purchased because it touches every spot I hurt.  

    I am so sorry you are going through this and I will keep you in my prayers. We need to be our advocates and have to find a cure for this aweful disease!!

    Theresa (sorry for all the ranting)

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    • Posted

      Hiya Lucyred,,you poor precious you, what an amazing ammount of meds you need to take..this illness is seems like quite a rich persons illness for sure, Would hate to add up what it actually costs..I'm in Australua....wow!! It fascinating how this horrid Syndrome is all over the world.yet most doctors don't seem to know too much about it???.I too was rushed to ER with a possible heart attack once..only to find out it was yet more symptoms of Fibro...the one and only med I take now is Amithriptilyne 25mg at night, before bed and I sleep like a baby...with no pain...all my others meds are natural...it's taken quite a few years to get where I am now, I've had Fibro for over 21 years and Sjorerns Syndrome for almost 24..now...plus all the other bits and pieces ..that seem to come along...I'm 65 this year..., I have a wonderful supporting husband, whom without I just don't know what I would have ever done..many people blog, they don't have this support...how very sad...just can't believe how young people are being diagnosed with it now...it is just sooo sad....they have their whole lives in front of them too....I once used to think it was an older person issue...but Dr's reckon it all started with a shock/trauma to the system...when I went through a very traumatic time it was quite a few years before diagnosed, but that seems to be the ear cry of many sufferers...I totally agree with you saying "We need to be our advocates and have to find a cure for this aweful disease!!" If I didn't act with my health, who knows where I'd be today...have a wonderful day Lucyred and be blessed..:-) xxx
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