New and Looking for Advice!

Hello, I am a 19 year old girl from Scotland and have just been diagnosed with fibromyalgia. I also suffer from extremely severe restless leg syndrome and have done since birth and so i take various strong medications for this. Because of this I have not yet been prescribed anything for fibromyalgia as this needs to be worked out. I suffer from extremely debilitating fatigue where I would easily sleep for 18+ hours per day if I could, which is very stressful and frustrating as I am a full time student. I often suffer from a lot of widespread pain, including shooting pains in my arms. Between this and all of the pain and discomfort I get from restless leg syndrome, I am becoming desperate. Does anyone have any tips which I can try to get me started to find some relief?

18 Replies

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  • Hello and welcome to our friendly fibro forum where you can get advice, support and help with a chuckle or two.

    Have you seen our Mother Site fmauk.org ? This is useful for information about symptoms, treatments and links to guides.

    Pain, fatigue and restless legs are symptoms many of our forum friends suffer from and the medication taken varies from person to person. Unfortunately there is no "one size fits all" answer. What suits on may not suit another, it is all a matter of trial and error. Some swear by Pregabelin or Gabapentin, for others their side effects are too troublesome. It is the same with amitriptyline and opiate based painkillers. I am sorry that this is probably not the answer you are looking for, there is no quick fix.

    There are some ways that may alleviate your symptoms a little, like giving up gluten which may help IBS. Some people get relief from a long soak in a bath with Epsom Salts added as this can help to raise magnesium levels.

    Exercising in water can help to keep you from stiffening up and make you more mobile.

    If your pain becomes more troublesome then ask your GP for a referral to a Pain Clinic which will help you to manage your pain.

    There are other young people on this forum and a few who are at University. I hope they will make themselves known to you.

    Do please look at Related Posts, Pinned Posts and Topics, all in blue on the right hand side.

    I would advise you to lock your post for your internet security. Simple instructions are in Pinned Posts.

    I do hope we see more of you around the forum.

    Kay

  • Hiya catherinem13 welcome to the gang. Sorry you have fibro and at such a young age. It is very much trail and error as we all react differently. most fibro sufferers are low on vitamin B12 and D. Also magnesium oil I find is good for the brain. Take care and ask away or just join in with your own thoughts. Good luck xx

  • Hi Angie, Thanks for your support. Through RLS I have been found deficient in iron, vitamin C, D and calcium- so take supplements for these. Magnesium might be worth a try! Thank you xx

  • Hi catherinem13 and welcome to our wonderful forum ☺I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you & talking to others at different stages of their lives with Fibro & learning from their experiences.

    It does help with the whole process & i wish I had found the site years ago. I have had Fibro for nearly 30 yrs & I'm still learning about it, like we all are.

    I'm sorry you are in so much pain and i see you already have some good advice. Many people with Fibromyalgia suffer with RSL although it is a seperate disorder, you will also find that doctors prescribe similar medication. As bluebell99 says it's trial & error with the various medications that are prescribed. It must be very difficult trying to study & have the awful fatigue that generally comes with Fibro. The meds do make you feel quite drowsy to begin with but you have to stick with them bec ause you do get used to them.

    Anyway I look forward to chatting to you on the forum.

    Peace, luv n light

    Jan x

  • Hi Catherinem13, I used to have really bad restless legs then doctor gave me vit d ( fibro peeps usually very low in this) and I starred using Epsom salts in Bath and use spray magnesium oil on legs at night. Big difference, Peeps in Scotland even more likely to be low, due to lack of sun on skin. Good luck

  • Hi thanks for your help! I am deficient in vitamin D and so take supplements daily for this! thanks for the advice :)

  • I would try any thing you can to stop the Fibro A good multi vitamin is a good idea and loads of fish oil Good luck honey x

  • Hello Catherine It looks like you on the same road as a lot of us I sterted with RLS also then Fibro then Asma and now Tinatass I think you have to get your medication correct which is differcult for you as you have to study also Your life is really just begining so I think you need to consult with your doctors to get it right I think you could try some self massage to your arms and legs with a good cream may be double base creamfrom the doctor along with tiger balm . You will get plenty of help on this Foram and may be one of the younger members would be helpful to you Any way good luck and chin up x

  • Hi luv,I too have had rls since kid,muscle pain,nerve pain burning feet n elbows,want to but cannot get full sleep as wake up,wen do nod off,with the stiffness pain,can't stay in one position for much more than few mins,on top have to take antipsychotic and diazepam,tried all the meds,gabapentin helped with pain n sleep but gave me dark mood upon waking,pregabalin is what I take but can only tolerate low dose b4 getting side effects,its my med of choice but everyone's fibro is different for them,n one persons medicine is another's poison,horses 4 courses, hope u feel better soon,I felt like I was going mad for years but got great gp now,got chest infection at mo so having bad flare,God bless,Jay (46)

  • Hi there, thanks for your help! I was previously prescribed Pregabalin for about a year progressing up to the maximum dosage but I didn't feel any affect of it at all. I guess everyone just has so many different experiences with it. I hope that things work out for you :)

  • Hi! Welcome and good luck for you in your treatments. I see that very few people here mention alternative medicine, but from what I have learned researching, fibro requires a combination of regular and alternative treatments. I'm on Pregabaline and steroids for the pain and muscle cramps (which for are so bad that sometimes I can't move normally), but I do believe in accupuncture, quiro and massages with oils. I am not pain free but I can manage and I don't suffer from side effects like from opiates and such. Vit D deficiency is also very serious in terms of pain. You should check it out as well. All the best for you!!

  • Hi there thanks for your advice! I took pregabalin for about a year but felt no effect or relief from it at all :( I also currently take vitamin D supplements so I will definitely persevere with these. I have never tried any alternative treatments but they do interest me so I might have a look further down the line. I hope things work out for you :)

  • I saw someone wrote about sunlight and Vit D. I live in the south of Brazil so, not that sunny all year... Only the supplements aren't enough, try to get some sun if possible! I try to sunbathe whenever and I tan very easily. People with pale skin require less time under the sun, so yay for them hehe. My family came from Germany but we got some Spanish blood in there somewhere, which ends up being a downside for the Vit D production haha. ;)

  • Hi,

    I'm in Scotland too (Elderslie, Renfrewshire). You may find it useful to find out if there is a support group local to you ... I know our Paisley group has a few younger members who find it helpful to have others their own age to talk to xxx

  • Hi there, oh that is really good to know! I am from Ayrshire so I may look into this. Thanks a lot :) xx

  • There's a support group meets in Kilmarnock xxx

  • Oh thats just 10 minutes up the road, thanks so much xx

  • Hi catherinem13

    Welcome to the forum and it is wonderful to make your acquaintance. I can see that you have been given some wonderful replies and advice, so I will simply and sincerely wish you all the best of luck. Please take care of yourself.

    All my hopes and dreams for you

    Ken

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