Hi All,I suffer from Fibromyalgia, Lupus sle. It is my first time on your community so am asking the question below.

[Loopy-loo]

I was referred to a neurologist as I have been suffering with burning and painful fingertips, which also affects my arms , also my toes and calfs. Although my fingers and arms are the worst affected. They have steadily got worse over the last few years, in fact unbearable.It used to be mainly in the evening but at the moment it seems to be relentles . The neuro seemed to think it was RLS. I do know that I am not iron deficient as I have been checked for that. I was told that I would need more bloods done to know what medication to take.I already take gabapentin, amitriptyline, prednisone, sulfasalazine, and methotrexate for other conditions. I also was prescribed tramadol for pain relief which doesn't seem to be working. I was wondering if anyone could help or advise if they had experienced the same kind of things that I seem to be having at the moment.

[Hidden]

Hi, Loopy-loo, it doesnt sound like RLS to me, RLS, means you have to have an urge to move your legs, usually when resting, its stops you sleeping at night, unless you have it mildly. I will post the criteria for RLS, to give you an idea if you think you have RLS, The neuro, should know what RLS is and how it is diagnosed...

[Hidden]

The 4 official criteria for helping to confirm

a restless legs syndrome diagnosis

These criteria were established by the National Institutes of Health in a workshop with members of the International Restless Legs Syndrome Study Group.

The four criteria are:

You have a strong and often overwhelming urge to move your legs. This urge is usually accompanied by the various unpleasant restless leg syndrome symptoms or sensations I mentioned above.

The urge to move or the symptoms of restless leg syndrome are triggered or worsen when you're inactive and resting...either lying down, sleeping, or just sitting.

Your restless leg syndrome sensations are relieved, either partly or totally, with movements. Activities such as stretching, walking, riding an exercise bike, or shaking the legs. This relief continues as long as the movement continues.

Your restless leg syndrome symptoms and urge to move are worse at night. Also, they are either gone in the morning or are very slight

The above is how RLS is diagnosed as there isnt a test which can be done.

Mostly, to get relief at night, it means getting up and walking up and down, jumping legs which seem to have a mind of there own when trying to drop off to sleep, it can also effect other parts of the body, arms, shoulders, torso, for some people

[Loopy-loo]

Thanks to you all for replying.I am doubtful myself with the diagnosis as it is my fingers and arms that are more affected. It is worse when trying to sleep.Recently it seems relentless and is painful during the daytime. My legs are toes are also painful but not to the extent as my hands and arms.I never get the urge that I need to get up. I have to get up because my hands are more problematic and am finding it difficult to sleep because of the pain and burning sensation. Not sure where to go from here.Thanks for all your advise and I wish you all well and hopefully manage to get a decent nights sleep.

[Hidden]

I have some of that buring, tingling, painful sensations in my

toes, feet that comes on more towards evening than in the day.

It's a stinging, numbness, pin prickling, burning, feels bad thing.

So far, no solid answers.

It acts up more so when I eat carbs, sweets..

I do not have diabetes. *checked AC1, blood monitor daily...

It's not carpel tunnel *except a little in my wrists*

We are doing a medication dump for me right now...I'm

off everything until we can get this figured out.

I am seeing a Rhuemy, PCD, Neurologist.

Keep me posted as I will you and maybe we can figure this

one out.

Mine started 5 weeks ago.

Karen ~USA

PS...My legs want to move all night, early evenings when I am so

exhausted that I break down and cry over it. It's so much worse

without the medicines this past week. I am overwhelmed. =/

[Hidden]

RLS can affect the whole body so one often finds it difficult just to stay still.

Usually at 2 am in the morning I am awake with the urge to get up and move about. I can't stay still. During the day even when I am exhausted I cannot stay still. I have to be doing something all the time. I use Neupro patches for the RLS I also have PD.

People with Fybromyalgia often have low Vit D levels I believe, so get your doc to check..

I take vit d supplements but it is difficult to know if low levels cause the pain, or if it is the PD .

I do think the Neurologists/docs do not have an answer at least if they do they keep it to themselves.

[Loopy-loo in reply to Hidden]

Hi Oldtyke,

If you don't mind me asking what is PD ?

[Hidden in reply to Loopy-loo]

PD = Parkinsons disease

[Loopy-loo]

Thankyou all for your info. I will be speaking to my doctor on Monday to see what his thoughts are on the RLS diagnosis.I will mention to him the Vitamin D scenario. The burning in my fingertips seem to be constant, although worse at night. I have had these symptoms for two years. This time last year it was thought I had secondary Raynauds but that has now been discounted. Will keep you posted on the outcome ( If any ]

[Loopy-loo]

So sorry to here that.What was your first diagnosis ? As I was led to believe that if you are unlucky enough to be diagnosed with RLS, it doesn't mean that you are at risk from developing PD ?

[Kolla]

Dear LoopyLoo

I suffered from fibromyalgia for years. I gave it up when the polymialgya and GCC appeared.

I keep in touch with fibros on their website.

They are all, or those who can get it, very pleased with a drug called LND

Low DoseNaltrexone. They who have got this are very pleased and feel that their life has changed for the better,

According to some of them, many doctors are reluctant to prescribe it.

Maybe you know this drug.

All the best

Kolla