New Comer with 20 years of RLS

[mfh5]

Hi Everyone,

I just joined couple of days ago, this forum is tremendous and full of information, thanks to moderators and everyone involved!

So my story goes on like that I have been having unrefreshing sleep(even after 8-10 hours of sleep), waking up fatigued, very low energy levels in the morning, disturbed/agitated mood and all, for almost more than 20 years now if I recall correctly. I am having this chronic fatigue since early 2000's, through out the day, 7 days a week, 365 days a year. No one was able to diagnose and everyone(local docs, I am from Pakistan, age 38, 5'11', 89Kg) did their experiments, sort of, over me. Tried various treatments/tests/labs/medicine/vitamins etc but to no use till 2021.

Finally, in Feb 2021, I had my sleep study(due to load snoring almost daily) and was diagnosed with obstructive sleep apnea(OSA). I was recommended to use CPAP at pressure of 6cm, so started using CPAP and it improved my sleep and morning fatigue as well(somewhat though not 100%, but definitely better than before). But the "pain" in my both calf's is still there(for 20 years). I again went to my sleep doc with same complaint of chronic fatigue symptoms in the morning/day and he noticed that I have very large amount of leg movement during the sleep study, both RLS and PLMS. He suggested to get advise from neurologist for RLS.

Well, my RLS does not fall under the "strong urge to move" but I tend to move my left leg a lot, while awake in bed only, as it helps in reliving the discomfort feeling I have in calf. At times, it gets better when I exercise for 20-30 mins but again comes back in an hour or so, its like having fatigue legs through out the year and with no desire to walk or move from sitting position and just want to keep sitting or lay in the bed all day long.

Anyway, so I consultant a Neurologist and he prescribed me with pregabalin 50mg daily after breakfast(but I am taking it in night to avoid its side effects of dizziness etc in the day as my wife said as she is doctor as well), I have started taking Lyrica 75mg because my mother took it in past for her neuropathic pain and it really worked for her, so I went for Lyrica 75mg by Pfizer instead of local brand of pregabalin, started 3 days back. No improvement in symptoms so far. I think I should give it a try for 2 weeks at least to work or more. Also, he asked to use Centrum Silver as well, I am working on getting them, since they are not easily available here, are they of any use for RLS?

I haven't done any iron tests yet, based on the threads I read, I am planning to have fasting blood sample tests for:

1. Serum Iron Ferritin
2. Iron
3. Total Iron binding capacity TIBC
4. Transferrin saturation TSAT.

I think these are the required ones, please let me know otherwise.

Lastly, I saw some threads where Beth and Holland are recommending for IV iron based on 2018 research. Is there any feedback/results, who opted for IV Iron in this forum? Not sure its(IV iron) available in my country or not though.

Looking forward feedback/comments on my approach and medication from the seniors/experienced.

Thanks.

[stjohnh]

Hi there, glad you found us and sorry you are having troubles. It is not clear to me that you have RLS, it is diagnosed based on symptoms and leg jumping WHILE AWAKE. Leg jumping while asleep is frequently due to PLMS. Initial treatment is frequently similar, so at this point it may not make much difference. I'm glad you are getting the iron tests.

2018 Guidelines paper is not based on 2018 research, the paper is based on dozens (at least) of scientific papers published over the past couple of decades. There are lots of people on this forum who have had IV iron with good results (me included). You should be aware, however, that the published data seem to show that only about 1/2 of RLS patients that get IV Iron have a significant improvement. It is not known why only some people are improved. But because other treatments for RLS have so many side effects, even though IV iron doesn't always work, it it worth trying in all RLS patients that meet the criteria. My experience with reports on this forum are that most people who get IV iron are improved, much more than 1/2 of them. I'm not sure why reports of IV iron on this forum seem better that what the scientific papers report.

IV iron is available in every country I believe. It has been used for 50 years to treat severe iron deficiency anemia. The usual problems getting IV Iron for RLS are:

1. patient has "normal" ferritin and the doc thinks patient doesn't need iron. Doc doesn't know that a normal ferritin means only the BLOOD iron is ok, and has only a slight relationship to BRAIN iron (which is the real problem).
2. doc doesn't believe IV iron will help RLS
3. clinic rules only allow IV iron to be given for iron deficiency anemia (not RLS). In the United States, the FDA has not approved IV iron for RLS, another stumbling block.
4. the preferred preparation of IV Iron (Injectafer) is too expensive and insurance won't cover cost.

There are no vitamins that have been proven to help RLS. There are some minerals (iron) which help, but the amount in Centrum Silver won't make any difference. There are some other minerals (esp magnesium) which seem to help some people, but it is not consistent.

[badnights]

HI again mfh5
I also have to wonder about the diagnosis if you don't experience a strong urge to move. But it can be difficult to know what is a strong urge to move.

Try this. In the evening when you're in bed and your symptoms are bad, set a timer for 3 minutes, or just place a clock where you can see it. Get comfortable, stop moving, and try to relax. Without moving your legs or arms a millimeter, just lie there relaxed for 3 minutes.

If something interferes, wait a minute or two and try again.

Can you do it? Or did something interfere?

[mfh5]

Hi there, glad you found us and sorry you are having troubles. It is not clear to me that you have RLS, it is diagnosed based on symptoms and leg jumping WHILE AWAKE. Leg jumping while asleep is frequently due to PLMS. Initial treatment is frequently similar, so at this point it may not make much difference. I'm glad you are getting the iron tests.

2018 Guidelines paper is not based on 2018 research, the paper is based on dozens (at least) of scientific papers published over the past couple of decades. There are lots of people on this forum who have had IV iron with good results (me included). You should be aware, however, that the published data seem to show that only about 1/2 of RLS patients that get IV Iron have a significant improvement. It is not known why only some people are improved. But because other treatments for RLS have so many side effects, even though IV iron doesn't always work, it it worth trying in all RLS patients that meet the criteria. My experience with reports on this forum are that most people who get IV iron are improved, much more than 1/2 of them. I'm not sure why reports of IV iron on this forum seem better that what the scientific papers report.

IV iron is available in every country I believe. It has been used for 50 years to treat severe iron deficiency anemia. The usual problems getting IV Iron for RLS are:

1. patient has "normal" ferritin and the doc thinks patient doesn't need iron. Doc doesn't know that a normal ferritin means only the BLOOD iron is ok, and has only a slight relationship to BRAIN iron (which is the real problem).
2. doc doesn't believe IV iron will help RLS
3. clinic rules only allow IV iron to be given for iron deficiency anemia (not RLS). In the United States, the FDA has not approved IV iron for RLS, another stumbling block.
4. the preferred preparation of IV Iron (Injectafer) is too expensive and insurance won't cover cost.

There are no vitamins that have been proven to help RLS. There are some minerals (iron) which help, but the amount in Centrum Silver won't make any difference. There are some other minerals (esp magnesium) which seem to help some people, but it is not consistent.

Thanks Holland for your feedback. I never had legs jumps while awake at all but during sleep my wife observed that I was having full body jerks, couple of times in an hour.

I just have my lab results:

1. Ferritin: 24.55 ng/mL Reference Value: Adult Male: 20 - 250 ng/mL
2. Serum Iron: 97 Reference Value: 65 - 175 ug/dL
3. Serum TIBC: 428 Reference Value: 250 - 400 ug/dL
4. Serum Transferrin Saturation TSAT%: 22.7 Reference Value: 14.0 - 50.0 %

These are fasting sample results and seems pretty normal to me. What do you think about these? What should be next steps?

[mfh5]

HI again mfh5
I also have to wonder about the diagnosis if you don't experience a strong urge to move. But it can be difficult to know what is a strong urge to move.

Try this. In the evening when you're in bed and your symptoms are bad, set a timer for 3 minutes, or just place a clock where you can see it. Get comfortable, stop moving, and try to relax. Without moving your legs or arms a millimeter, just lie there relaxed for 3 minutes.

If something interferes, wait a minute or two and try again.

Can you do it? Or did something interfere?

Thanks Beth for the feedback and tip. I tried it out couple of times, no movements in arms or legs at all. I will keep trying again though. The fatigue or uncomfortable feeling in both calfs is same as per RLS symptoms.

Thanks.

[stjohnh]

Thanks Holland for your feedback. I never had legs jumps while awake at all but during sleep my wife observed that I was having full body jerks, couple of times in an hour.

I just have my lab results:

1. Ferritin: 24.55 ng/mL Reference Value: Adult Male: 20 - 250 ng/mL
2. Serum Iron: 97 Reference Value: 65 - 175 ug/dL
3. Serum TIBC: 428 Reference Value: 250 - 400 ug/dL
4. Serum Transferrin Saturation TSAT%: 22.7 Reference Value: 14.0 - 50.0 %

These are fasting sample results and seems pretty normal to me. What do you think about these? What should be next steps?

This is a common set of lab results for an RLS patient. Firstly, most (if not all) RLS patients have BID (Brain Iron Deficiency). They indicate that your BLOOD iron levels are normal, meaning you have enough blood iron to keep your body making enough red blood cells. They also show that you would meet the lab criteria for IV iron infusions, per the expert group guidelines.

However, your symptoms do not support the idea that you have RLS. You may have PLMS, but full body jerks a couple of times an hour I don't think are enough to even justify the diagnosis of PLMS. In your first post you said the sleep study showed lots of leg jumping while asleep. Does your wife notice this? Did the doc actually say "you have Restless Legs Syndrome?"

[badnights]

Thanks Beth for the feedback and tip. I tried it out couple of times, no movements in arms or legs at all. I will keep trying again though.

The key to show that you have WED/RLS is if you simply can't lie still when the symptoms (pain, discomfort) are on you. WED/RLS movements are not involuntary - your legs won't jerk without instruction from you. (Involuntary movements are a problem for many of us, but they are not part of the WED/RLS suite of symptoms.)

WED/RLS movements are voluntary - it is more or less under conscious control whether or not we move - - so we can hold it off and hold it off... but the urge to move becomes increasingly strong until BAM we move, we HAVE to move. Technically it's voluntary, but it's an un-ignorable compulsion.

If you are lying there with your muscles tensed, that might be staving off the urge to move. If you have to tense your muscles in order to lie still, that might be a sign that you have WED/RLS. But if you can lie there relaxed while the pain-yuk-awful symptoms are happening, then you should continue to seek a diagnosis.