Please help.

[rooseph]

I am a 19 year old female. At 17 I was diagnosed with fibromyalgia but other than leg cramps and achyness I didn't suffer many symptoms. But after I graduated high school, (I became much less active and started sleeping more) I noticed a horrible feeling in my back when I layed down at night to sleep. Its not pain, its more like how people describe restless leg syndrome. Its an intense urge to get up and move around and when I'm standing I can't feel it for the most part. When its happening i cannont lay down and in fact have spent more nights than i can count walking circles around my house.its the most irritating and awful feeling. I was prescribed Tramadol for a sprained ankle and at some point realized the tramadol was helping with the feeling in my back so I told my doctor and she started prescribing it for what she called "back pain". Its not pain. I don't know what it is, I just know I'm miserable and I'm tired of doctors looking at me like I'm crazy when I try to describe the "weird feeling in my back". I've hears of restless body syndrome but don't know much about it. If anyone knowswhat this could be or can relate feel free to say so.

[jimeka]

Morning Rooseph, sorry to hear that you appear to have started with Rls at such an early age, it can be so debilitating. Before I was diagnosed with Rls I had a figure of 8 worn into my carpet due to me walking until my body gave up., usually around 4.30am. Anyway the best people to get good sound advise from on this forum are Elise and Pippins, and also the Rls web site. I would research it as much as you can then go have a sensible talk with your doctor and get the proper medication that suits you. Don't let it ruin your life, I wish you all the best, please let me know how you get on. Cheers Jimeka

[rooseph in reply to jimeka]

Thank you very much, I'm 30 weeks pregnant now but after I have my son I will be seeing a doctor and doing whatever diagnostic tests there are and then moving on to finding a medicine. I appreciate the kindness more than you know.

[Kaarina Administrator]

Hi Rooseph

I am sorry to read your story. As Jimeka says, a good start is here and if you have not already done so, please take a look at the RLS-UK website:

rls-uk.org/

Under FAQs you will find the question "Could I have RLS?". If you fit all five of the listed symptoms you may well have RLS.

There is also a RLS-UK page on FB.

Kaarina

[paulapips64]

I suffer with this too I get it all over my body I just have too keep stretching my whole body every 2 mins it drives me mad I can't sleep my doc don't know what it is I told her it's just like restless leg syndrome but all over your body it's not nice whatever it is sorry to hear you are suffering too x

[user_2]

Hi I started experiencing aches in back since maybe 14 but werent so intense, After my first child it would be around my ankle joints, sometimes my elbow area but mostly around my shoulder blades. Strange though when i get it massaged I would burp. My Mom has had it since when I was a child wish I coukd have shared this with her to show her we are not alone but sadky she pasted away last September. I only joined this site few days ago. Went to so many doctors, gave me muscle relaxers etc. I had to basically self diagnose myself by reafing on internet as I was going nuts sleeping maybe two hours every night. My doc recently prescribed Clonazpam and Lyrica has been helping a bit when I drink. I am 43 years old so hapoy to have found this site thought I was alone.

[Hidden]

To have RLS you really need to have the urge to move your legs, so i would recommend you look at the website that Kaarina has posted on here. Just to see if you have all the 5 criteria which would point to having RLS.

[Kaarina Administrator]

rls-uk.org/faqs/4568109901

What is RLS?

Restless Legs Syndrome is a neurological disorder characterised by an urge to move in order to stop uncomfortable, often painful, sensations. It most commonly affects the legs but many of those with the condition will also find that other muscles are affected such as the arms or torso. So, although the most widely cited descriptor of the condition refers specifically to 'Restless Legs', it can affect many parts of the body.

Could I have RLS?

The International Restless Legs Syndrome Study Group (IRLSSG) has proposed a set of diagnostic criteria for RLS. If you suffer from all five of these symptoms, you may have RLS. We recommend you visit your GP should you have any health concerns.

Diagnosis of restless legs syndrome (RLS) can be made if all of the following five criteria are met:

1) A need to move the legs, usually accompanied or caused by uncomfortable, unpleasant sensations in the legs. Any kind of sensation may be a manifestation of RLS and a wide variety of descriptions have been used ranging from "painful" to "burning" - some people say it feels like they have insects inside their legs or arms. Sometimes the need to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.

2) The need to move and unpleasant sensations are exclusively present or worsen during periods of rest or inactivity such as lying or sitting.

3) The need to move and unpleasant sensations are partially or totally relieved by movement such as walking or stretching at least as long as the activity continues.

4) The need to move and unpleasant sensations are generally worse or exclusively occur in the evening or night.

5) Your symptoms are not solely accounted for by another condition such as leg cramps, positional discomfort, leg swelling or arthritis. RLS often causes difficulty in falling or staying asleep, one of the chief complaints of the syndrome. Many people who have the disease also have periodic limb movements (PLMs)—jerking of the arms or legs that is often associated with sleep disruption.

[rooseph in reply to Kaarina]

These symptoms are dead on. I can't tell you how much I appreciate it.

[mitziblue]

Sweetheart, so sorry you have this terrible disease at such a young age. I too have RLS along with Fibromyalgia. At the pain clinic I went to my doctor said that a lot of women have both. I guess they may go hand in hand? I hate to tell you this but it's only the beginning to other crazy symptoms to come. I've had RLS since I was a child. I would cry myself to sleep. As I got older the leg and hips started to cramp up and I could hardly get out of bed. Then came the onslaught of IBS and that was horrible enough, but then came the constant pain all over my body. Then I found I could no longer take many medicines I used to. Then came the little tiny red places with when itched was a tiny blister that takes forever to heal. Plus the sensation of bugs or bees on my feet and legs like I was being bit or stung. Since all of that I've had ulcers, a fungus in my esophagus, inflammation in one of my eye's twice. The best thing you can do is go to a pain clinic and find out what works for you. Try not to over do it on the rare good days and take it a day at a time. I hope this helps you as I thought I was going nuts trying to get a diagnosis. If I can help answer any questions or you need to vent I'm here. xxxx Mitzi

[rooseph in reply to mitziblue]

Thank you so much for your compassion and help. I'm nearly in tears over the replies I've gotten just for the fact that I've had so many doctors look at me like I was crazy and all I wanted was a name to put to the feeling. Now I know there are things that can help and I'm not the only one feeling like this. ❤

[Hidden in reply to rooseph]

Hi rooseph, although I haven't had the feeling in my back-just legs, arms and when augmentation was at its worst one side of my face, I know many members do the the feeling in other places.Have you looked at Kaarenas post further up page which gives the diagnostic ctiterea? If yoi substituted every time it says legs for back does it sound like you?

[rooseph in reply to Hidden]

I read through the link posted at the top of her comment, is that what you're talking about?

[Hidden in reply to rooseph]

Yes, just noticed your having a baby congratulations! X

[rooseph in reply to Hidden]

Yes and its dead on with my symptoms. I'm beyond happy to have found out what this is. And thank you very much

[Hidden]

I certainly hope those other things you have going on will not happen to rooseph. I certainly dont have them. They are not part of having RLS. We mustnt scare people so they think having RLS they will have alot of other health issues along with it. The Fibro yes, some people have both RLS and Fibro.

[user_2]

Sorry for typo errors just tired