Symptom changes

[Jemcd2]

I would be interested to see if any one has experienced symptom changes from when they first had/diagnosed with RLS .

Initially, my RLS was the classic, constantly having to move my legs during the night while sleeping or resting. Even sitting in a chair, for long periods of time ( aeroplane,cinema) I couldn’t sit still.

Over the years my symptoms have changed, although I still find it difficult to sit for long periods of time, my symptoms when lying down in bed to sleep have gone through various changes.

I experienced the feeling of having a tourniquet around the mid section of my thigh, I used to have the sensation that I had a Mexican wave flowing from my pubic line down to my knees as if my legs were waking up seconds after the rest of me.

Until recently (12 months) it was only ever in my right leg.

Now I experience discomfort in both front thighs. Now the feeling is a prickling, shaking, tremors again trying to find ways to describe it is almost as bad as the condition. The main problem for me now is that this latest symptom is waking me up on average 4 times a night, every night. I’m emotional, frustrated, tired and fed up of the constant tossing and turning to get back off to sleep after being woken up.

I’ve had MRI’s thinking it was an orthopaedic condition- nothing was found

I’ve had physio, paid for Accupuncture, chiropractors, massage,used a tens machine in the past as a nightly aid. A pain clinic professor suggested I invest in one that can do 8 hours rather than the normal 25 mins? This latest symptom is completely different because I can fall asleep but can’t stay asleep for more than two hours before the sensation wakes me up or my brain wakes me up to deal with the symptom? I have no clue.

I have just done the RLS-Rating Scale and scored 32.

[SueJohnson]

Certainly symptoms can change. Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.

Are you taking any medicines for your RLS?

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Jemcd2 in reply to SueJohnson]

Thank you for replying, I was prescribed pregablin 75mg but stopped them as they affected my balance when walking, I seemed to veer off to one side. Then they prescribed Amitriptyline 10 mg but I was so drowsy the next day it interfered in my work. I haven’t been back since because they referred me to orthopaedic outpatients I’ve had MRI on thigh but no findings. I have an appointment at 1600 hrs today with my GP. I also take Fostair for Asthma and HRT

[SueJohnson in reply to Jemcd2]

You might want to try gabapentin.

Although it is basically the same drug as pregabalin except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Start out with 300 mg, take it 1 to 2 hours before bedtime and wait 3 weeks as it takes that long to become fully effective. After that increase by 100 mg every couple of days until you reach the dose that controls your symptoms. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. The Fostair has just a slight chance of making your RLS worse, but the HRT assuming it contains estrogen is likely to. How about your ferritin?

[Jemcd2 in reply to SueJohnson]

Hi,

Thanks for all your advice. I went to GP last night armed with a more knowledge. I have a full blood test booked for Tuesday am.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

[Munroist]

I had symptoms similar to yours, e.g.the tourniquet around the thigh and odd ripples and pulses in the leg which I believe were associated to a back/spine issue where discs were pressing on nerves. As the disc issue receded those symptoms also reduced although if I’m careless and overdo things with my back I can occasionally provoke them again. I I also had prickling and tingling when things were very aggravated and these also reduced as I worked out how to pace myself and manage it. My RLS symptoms are mainly classic RLS urge to move and PLMD in the first part of the night, and these haven’t changed much since they first emerged at the time of the back problem, but if I really overdo it, then I have very much more disturbed night.

[Jemcd2 in reply to Munroist]

That’s interesting, when it first stated the doctor queried a slipped disc but I had an X-ray then and since an MRI. I think the hardest part sometimes is trying to explain the symptoms. At one time the sensation was almost like a Mexican wave creeping from top of thighs down to knees. Thank you for replying.

[SueJohnson in reply to Jemcd2]

My symptoms included feeling like a tightening in my leg that either went up or down my leg.

[Jemcd2 in reply to Munroist]

I went to an osteopath on Monday just to see if a Deep tissue massage might help. He suggested that I might have a trapped nerve as well so it could be a combination of both. He mentioned dry needling as a possible solution. I’m going to continue for a few weeks to see if it helps.

[Tiptoes20]

Hi Jem

You asked me about my experience of acupuncture. I'm afraid it didn't work for me. I must have had about six sessions and it even brought on the cramp in my legs! There was no improvement so I gave up. What I get at night and I get bad nights and better nights is cramp mainly in my lower limbs which wakes me up every couple of hours and I also get twitching or pulsing in my legs. Not sure if it can be called RLS.

I was so tired from it a couple of weeks ago that I managed to get a GP to phone me and she prescribed Amitriptyline, which I see you have taken, not that I have collected yet. She told me to take it early, I can't remember whether she said 5 pm or 7 pm, because of drowsiness the next day. She wasn't even recommending it for the cramp. I also mentioned my replacement hip which has never been pain free. I know I have trochanteric bursitis and tendonitis so I can't lie on that side or I get pain and because I have been left 'lopsided' my knee on my good leg is now giving me trouble and can lock up. She said it would help with nerve pain. Not sure that it is a good idea to take it!

[SueJohnson in reply to Tiptoes20]

Amitriptyline makes RLS worse for most. What were you prescribed it for? If depression Trazodone and Wellbutrin are safe for RLS.

[Jemcd2 in reply to SueJohnson]

They gave it me for RLS

[SueJohnson in reply to Jemcd2]

Which is ridiculous because it is a tricyclic antidepressant and would not specifically help RLS/

[Jemcd2 in reply to SueJohnson]

Hi Sue finally got copy of Ferritin results, would you mind looking at it to see if there is anything that springs out at you. Thanks in advance Jean

[SueJohnson in reply to Jemcd2]

Certainly - would be glad to.

[Jemcd2 in reply to SueJohnson]

Thank you

Thank you.

[SueJohnson in reply to Jemcd2]

Sorry for the delay in answering, for some reason it didn't show up in my feed. It is very hard to read, but I think it shows your ferritin as 31. Look at it to confirm this. If so that is very low, which in one sense is good because it means that improving it to 100 or more may help your RLS. take two 325 mg of ferrous sulfate or two 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Ferrous sulfate for most people does not cause constipation but iron bisglycinate is much less likely to. If you can get it an iron infusion will bring your ferritin up faster. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new full panel iron test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[Jemcd2 in reply to SueJohnson]

Sue, Thank you so much. Can you recommend a supplement or brand for either. I have had a look but a lot have added ingredients or do I need prescription medication. I have an appointment on Thursday if it’s prescription only.

[SueJohnson in reply to Jemcd2]

Any brand of 325 mg ferrous sulfate is fine such as Nature Made and also any brand of iron bisglycinate such as Thorne or Gentle Iron. No you don't need a prescription.

[Tiptoes20 in reply to SueJohnson]

Hi Sue

No I have not had my ferritin checked in the way you describe as I'm rather nervous of approaching my GPs, they keep saying they are under stress and only make contact if it is important. I recently paid to have a range of tests done to see if anything showed up that might be the cause of my endless cramp. My iron came out as 22.2 umol/L whatever that means but it was within a range of 6.6-26 and total iron binding capacity 53 umol/L41-77. The report said this was fine and nothing else showed up as being strange except my blood pressure which was always good in the past. Lack of sleep can affect that I have read!

No I was not prescribed Amitriptyline for depression. I was trying to describe my endless nightly cramp but did add that my lack of sleep it not helped by my 6 year old replacement hip which has never been pain free, although I am assured it is firmly in place. This is all doctors are concerned about. I believe I have widespread tendonitis around my hip area and I know I have bursitis over my hip (trochanteric bursitis). I am also now lopsided and putting a lot of pressure on my knee and foot on my other side as that leg with original hip is now shorter. The knee can lock up at night. The GP thought this drug might help with what she called nerve pain. I'm not sure whether I should even take it at a low dose.

[SueJohnson in reply to Tiptoes20]

Actually I now remember that you don't feel a need to move your leg(s) so you don't have RLS. This is the differential diagnosis for conditions that are similar to RLS:

Peripheral Neuropathy

No circadian changes

No periodic leg movements in sleep

Nerve conduction abnormal

No improvement with movement

Akathisia

No circadian pattern

No paresthesia (burning or prickling sensation)

Improvement from dopamine blockers ie dopamine antagonist

Often have ferritin below normal

Peripheral Vascular Disease

Worse with movement, better with rest

Vascular and skin changes seen on exam

Nocturnal Leg Cramps

Unilateral, focal, sudden severe onset

Painful Legs and Moving Toe

No urge to move, no worsening at rest nor

improvement with movement

No circadian changes

[Tiptoes20 in reply to Tiptoes20]

Hi Sue, you are of course quite correct on this. I just wondered if the twitching in my legs that eventually started accompanying the night time cramp which is so tiring had anything to do with RLS. From your list and I have studied all sorts like this, I have to come back to nocturnal leg cramps and will have to carry on wondering why me and why in such intensity. thank you for that list.

[SueJohnson in reply to Tiptoes20]

Are you taking any medicines for your RLS? Have you had your ferritin checked?

[cumoneileen]

oh no, not had those symptoms in my 58 Years of RLS. Just constant jumping of my legs, can't sit, lie down, have to keep moving . Travel is a nightmare. Plane , have to have an Isle seat, so I can get up and walk around. Another is bus, can't walk around. Not sure what you're symptoms are. But glad you are being looked at and you will be sorted out.

[Meritus]

I have just rushed a reply to Ephemera as I know how desperate she must be. I do recommend the 'Restiffic' foot wraps, not perfect but are without side-effects and give me some sleep on some nights. Tried just now to find their website in UK but only found in USA. I have had hyperlinks deleted by forum moderators as they don't seem to like brand-names! I have no link with the company, just grateful I found them when they were available in England. Let me know how you get on.

[Meritus]

Restiffic has been accepted by the US FDA and successful trials are on the Restiffic website. To quote:

"The successful results of the Restiffic clinical trial were published in the Journal of the American Osteopathic Association in July 2016, in the article “Targeted Pressure on Abductor Hallucis and Flexor Hallucis Brevis Muscles to Manage Moderate to Severe Primary Restless Legs Syndrome” by Phyllis J. Kuhn, MS, PhD; Daniel J. Olson, DPM; John P. Sullivan, MD."

Haven't looked yet but apparently you can view the article on the JAOA’s website. I have found R........... effectlve more nights than not. Surely worth a look?