Newly diagnosed fibro worried! - Restless Legs Syn...

Restless Legs Syndrome

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Newly diagnosed fibro worried!

Donna67honey profile image
14 Replies

Hi everyone iv just been diagnosed with fibromyalgia I'm 35 also have an underactive thyroid, I wondered if anyone has sore muscles all over their back that are sore to touch and ache, my arms neck and shoulders ache too! I don't a stupid thing the other day and googled upper back pain and lung cancer came up, my doctor has explained my pain is muscular and is fibromyalgia I also get leg pain sometimes. Iv just never experienced this before! Just wondered if anyone had similar sore back. X

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Donna67honey profile image
Donna67honey
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14 Replies

I was in agony my whole body ached, I was then diagnosed with ME and advised to stop gluten by a specialist, within days a great deal of my pain had stopped, can't advise strongly enough to try a week without gluten to see if it makes a difference. I was amazed at the difference it made and would not have believed it if I had not experienced it. Good luck

Donna67honey profile image
Donna67honey in reply to

Hi I know I'm lactose intolerant, I might try going gluten free also, its hard as everything has gluten in it, maybe I could cut it out gradually such as bread first, its worth a try anyway! Sick of having muscle pain.

in reply to Donna67honey

I had to go off lactose as well, and a 10 year IBS problem cleared up almost over night.

I am so glad to have found this out, best of luck with it, OK the gluten free bread is more expensive but it is quite tasty. There are plenty of alternatives available, just wish I could find dairy free ice cream within a decent distance, can get it anywhere within a 40 mile radius of where I am :(

Donna67honey profile image
Donna67honey in reply to

Wow definitely going to try this out, sainsburys do dairy free ice cream not sure which stores though. X

in reply to Donna67honey

Thanks for that, I'll need to take my spoon as the nearest Sainsburys is an hour drive from me, I'll make sure its a big one :)

Let me know how you get on gluten free, watch out for all the hidden gluten, I was amazed when I started reading the labels what is in food, (seems lactose/milk powder is in nearly everything!

in reply to

I wanted to be able to control the ingredients in ice cream, so I bought a Cuisinart ice cream maker that has a 3 cup capacity, a fairly small amount, and you can use almond creamer, soy creamer, coconut creamer, whatever you prefer, and sweeten with stevia. It tends to be less creamy than if you use dairy cream, but you can adjust the recipe to where it tastes pretty good and satisfies that need for ice cream. I like to top it off with crushed cashews and ground up dark chocolate that I grind up in one of those little crank nut grinders.

in reply to

Thanks, I'll have to talk nice to the Mrs!!! :)

Gonzo123 profile image
Gonzo123

I have the same symptoms and my mother had fibromyalgia

restlessinlondon profile image
restlessinlondon

I have found being dairy free is a great help too. The best ice cream alternative I have found is Swedish Glacé ice which I get from my Sainsburys.

Windwalker profile image
Windwalker

You are describing what happened to me when I was 35. I went to Mayo Clinic in MN where they did every test known to them at the time. The name had not been assigned to the condition at the time so they said it might be mental, so they ran a full mental workup and declared me sane. Some years later they named it Fibromylgia and started giving me various drugs, none helped so I live with some level of pain for over 40 years now.

It seems that all of us who have RLS also have some level of several other diseases or conditions as most would rather call it. We sleep badly because of the excessive movement or we take some kind of Dopamine drug and get a few years relief from RLS and sometimes the cure is worse than the disease. My own mother had 9 sisters who all had RLS and several diseases that seem to accompany it. The last one just died at age 93. My own mother suffered greatly and lived to age 91. One of the sisters made it to 106. My prayer is that I don't live that long and that some morning my wife of 60 years will find I slipped away in my sleep….. You my friend, are at the beginning of a long ride and the best we can hope for is good control of the symptoms and some way to be comfortable at night and productive in the day time. Good Luck

Windwalker

LynnTenn profile image
LynnTenn

Yes. Sore spots in my back 24/7.Muscle aches, soft tissue pain is relentless.Hot baths with epsom salts,baking soda,and lavender essential oil is somewhat soothing.I use Biofreeze( order from Amazon) on my arms,hands,across my forehead, anywhere I need it.I also take Ultram (Tramadol)50mg every six hours for pain, as well as Neurontin(Gabapentin)300mg three times daily for nerve pain and sleep aid.I highly

recommend magnesium glycinate 2xdaily(especially at bedtime), and potassium(99mg)at bedtime for rest and restless legs.

Donna67honey profile image
Donna67honey

It just feels like every muscle in my back is sore and aching.

howlinwoolf profile image
howlinwoolf

RLS and fibromyalgia are very often comorbid. Fun, right? Have you tried magnesium baths (Epsom salts)? They are good for both things, at least in my experience.

Pallawalla profile image
Pallawalla

Hi Donna! I have the same symptoms and I take a muscle relaxer, Flexaril. Makes me sleepy sometimes but it helps.

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