Need to know

[Missy1975]

I have had RLS for the past 15 years. It does come and go and the moment, it is definitely there. In the last six months I have developed tingling and numbness in my hands, at night and during the day, I have been tested for carpal tunnel and it's not that. I have also developed it in my feet, as well as sharp stabbing pains,that come and go, in my toes, hands and back. I have started to flip-flop all night long because if I lay on my side for to long my joints become sore and mildly numb, which causes me to roll-over and wake-up. If I lay on my back my RLS seems to aggravate me more. Does anyone else have these similar symptoms - I saw a neurologst today and they say it's just stress creeping in, but does stress also cause, hand weakness, minor loss of dexterity, aching pain etc. I feel like I imaging crazy!!

[Polar Bear]

Missy - I can relate to all of those symptoms, the numbness, tingling, stabbing shooting pains, hands feet toes shoulders hips.
In my case it has been diagnosed as fibromyalgia/osteoarthritis.
Some days are worse/better than others.

Bed isn't a great friend, as you say, tossing and turning when you get sore in one position.
Have you tried a memory foam mattress - this has helped me somewhat.

I don't think much of your neuro's comment 'its' just stress creeping in'.

[Missy1975]

Thanks Polar. I agree the comment was very frustrating! I feel as though all my symptoms were just pushed aside I recently bought a new mattress - I figured a new one was definitely worth it - it has helped somewhat, but the pain is still there. I feel as though I'm still laying on those joints even after I have gotten up, and the numbness is is in the background. I feel like no-one believes what I'm saying, but I just don't feel right!!

[Polar Bear]

Is your new bed a memory foam.
Once we realised how comfortable the memory foam was, we bought 3" memory toppers for the other beds in the house.

Also what about your GP. Is he/she taking your pain/tingling/numbness symptoms seriously.
Many of us have symptoms that come along with WED but there can be other ongoing conditions alongside the WED.

Are you taking medication for your WED/RLS? Perhaps not if the WED comes and goes.
With regard to WED have you had your ferritin blood serum checked, raising that can often help WED symptoms.
It's a blood test that has to be requested, not normally done in general blood tests.

[ViewsAskew]

If you know things aren't right, you are likely correct.

I find that I sleep in a curled up manner - hands curled in, fingers in a fist. This causes numerous issues for me - including numbness and tingling! I sleep with a splint on and it helps a LOT. I also find that during worse nights, I get into some weird sleep positions and one of them (not sure which) almost always caused me to wake up with my hand asleep and tingly. I think I'm pinching a nerve in a certain position.

If you have better control of the WED/RLS, it might shed some light on the rest of it.

And, I agree with both of you - that comment by the neuro was not a very good one! Stress doesn't cause numbness as far as I know! Something else must be responsible.

[Rustsmith]

I believe that in the majority of the cases, when I doctor says something is due to stress, they do not have a good explanation for your symptoms and blame stress. Most of us have some form of stress in our lives, so it is an easy cop out. I had a doctor tell me it was stress shortly after I retired from work and thereby removed almost all the forms of stress from my life. I knew at that point that the doctor was either grasping for something to explain my symptoms or simply wanted to get me out of the office so that she could move on to the next patient.

[Polar Bear]

What Rustsmith said ...... fully agree 100%...

[Missy1975]

Thank-you everyone.

My mattress is not memory foam - it does have a layer of it though - we toyed with the idea of one, but ultimately my husband and I preferred the one we purchased.

My Dr. did a full range of blood tests and found my ferritin, B12, sugars, liver enzymes, thyroid etc are all normal.

I have not been taking any medications for my WED. I went to my Dr, after it reached a peak where it was driving me crazy, the only med she would give me was trazadone, which on the first night gave me a very bad migraine and a nose bleed. I took smaller doses, but the hangover affect was just too much. She would not prescribe me anything else. My Dr. and I originally thought I had carpal tunnel, I have all the classic symptoms, and even wore and splint which actually made it worse and I found myself waking up in the morning with it gone, but the tests came back negative and that is when I was referred to a neurologist. She thought if nothing else they could help me with my RLS. They just want me to undergo another sleep study and completely discounted the shooting/stabbing pains, numbness and tingling in feet and hands. As soon as they found out that I suffer with anxiety, they went the stress route. Sometimes I wonder if I'm imagining the symptoms, but surely I am actually feeling hand and body weakness when I think I am. I even changed jobs because of these symptoms! It is all very frustrating

[Polar Bear]

If your doctor has diagnosed that you have WED/RLS, I cannot understand why she is not following the standard treatment route for WED which certainly doesn't start with trazadone.
the only med she would give me was trazadone, which on the first night gave me a very bad migraine and a nose bleed. I took smaller doses, but the hangover affect was just too much. She would not prescribe me anything else.

viewtopic.php?f=2&t=1068
If you go to this link, scroll down a little until you come to the link for WED Medical Bulletin. Click on this.
It has lots of information regarding the treatment of WED and would perhaps be useful for you and your doctor to discuss.
She needs to get some information.

Also, you say that your ferritin is normal. Normal for other folks is not ok for sufferers of WED/RLS.
Doctors and labs consider 20 normal. We need our ferritin to be up near 100. The WED Medical Bulletin linked refers to a preferred level of 50 - 75 but this is slightly out of date.
Also ferritin should be around 100 before starting any of the first line drugs for WED/RLS such as ropinerole or mirapex i.e. a Dopamine Agonist.
You need to ask what your actual ferritin level is..... not just 'normal'.

Anxiety and stress certainly do make WED worse.

[ViewsAskew]

Is your neuro aware that people with WED are 15 times more likely to have anxiety than the "general" population???????? And 2-3 times more likely to have depression?

Clearly not.

[Rustsmith]

Another thing to keep in mind with respect to the anxiety has to do with the difficulty that any of us has with describing our WED sensations. Before I was diagnosed or treated, I felt a physical sensation that I described as physically feeling anxious while being mentally calm. I was able to convince my doctors that this was not anxiety by explaining that before retirement I held a high stress job that occasionally did cause moderate anxiety. But since retirement, there are no causes of stress or anxiety (other than a few minutes before the start of one of my races as a runner).

I therefore wonder how many WED/RLS patients do not really have anxiety, but cannot adequately convey to the doctor how they feel and so the doctor miss interprets what is heard to reach a diagnosis of anxiety, which of course could actually result in a case of anxiety for the patient

[ViewsAskew]

Another thing to keep in mind with respect to the anxiety has to do with the difficulty that any of us has with describing our WED sensations. Before I was diagnosed or treated, I felt a physical sensation that I described as physically feeling anxious while being mentally calm. I was able to convince my doctors that this was not anxiety by explaining that before retirement I held a high stress job that occasionally did cause moderate anxiety. But since retirement, there are no causes of stress or anxiety (other than a few minutes before the start of one of my races as a runner).

I therefore wonder how many WED/RLS patients do not really have anxiety, but cannot adequately convey to the doctor how they feel and so the doctor miss interprets what is heard to reach a diagnosis of anxiety, which of course could actually result in a case of anxiety for the patient

That is a definitely possibility for some since there there is a component of untreated WED that is very much like anxiety.

But, for me, I was emotionally anxious as well as physically anxious. When the WED is under control that emotional anxiety is mostly gone. There are so many people who've posted on this board over the years about being anxious, fearful, having GAD, etc, that I'm relatively positive that there IS something to the additional anxiety component. It may not be 15 times, but I would just about bet my house that it's definitely more than the general population.

While I think the model that the drug companies tried to push - the neurotransmitter model of depression, anxiety, etc - is fatally flawed, it's not completely untrue. It makes sense that if we have too much/not enough dopamine (and at the wrong times) that this affects other chemicals in our brain. Too much of one seems absolutely likely to mean too little of another. And vice versa.

Over the last ten years, I've had the several things (drugs, lack of vitamin D, hormones) change my brain chemistry and create instant depression, instant mood swings, instant anxiety - and all while I was sort of watching from inside, knowing that this wasn't really me, but without any way to prevent it or access the "real" me.