Help,

I'm new here! I have been under 2 different neurologists over last 6 years, under NHS, then in desperation saw another one privately( VERY EXPENSIVE) for another opinion. Result, after numerous tests with each, 2 said I had Restless Leg Syndrome, another said Peripheral neuropathy !! Have had all usual very strong medications , such as Gabapentin etc, all NO use, and side dreadful side effects . Also tried acupuncture on NHS- no use. Go to bed about 11.30 pm most nights and about 4 am tha pain in both lower legs sets in with a vengeance!! I do not suffer from jerking. Turn from one side to other to try and elevate pain, which doesn't work, and yet from the minute I actually get up, the pain subsides almost instantly. Lack of sleep, and the nightly pain, making me feel quite desperate!! Only glad to hear so many other poor women ( I am in the older age group) seem to have similar problems!

34 Replies

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  • Does Paracetamol give relief?

  • Also- where does Tacrine fit in?

  • Sorry, don't know what tactrine is??

  • Thanks- Tacrine comes up as a reference in your post by Health Unlocked. See the grey typing below your post ! I don't understand what goes on in their software department , but they have got some absolutely wierd associations in the past. This one beats all of them!

    Sorry , Buci- absolutely nothing on your part. Just a gripe I have with snooping interfering busybodies. HU in this case.

    Otherwise a great site.

    Sorry for the rant! 😢

  • No. And nor does co codamol! Thanks for responding so quickly.

  • That learns that query Madlegs!! As you say, strange things happen on various sites that confuse things!! Never mind, we will just 'plod on' haha 😂

  • Hi buci welcome ,it's not a very nice thing to have but the pain seems a little different to me ,usually it's more like horrible creepy crawly twitchy nervy feeling ,so you can't bear to stay in bed ,and just have to stay on the move hopefully someone else will explain more to you maybe some of the others have pain

  • Hi Mopsy. Thanks for your 'welcome' . I too get the creepy Crawly twitchy nerve flicks , and like you, mainly if I try and relax on a recliner or with my legs UP on stool or on my back in bed. Find slight relief from this by lying on my side but this doesn't help the nightly pain !!

  • Far be it for me to question eminent consultants, but I think you may have two issues-

    One is certainly rls as you described to Mopsy- a dopamine agonist med such as Pramipexol should help in the first instance- there are others you can progress to after.

    Secondly- the pain you describe does not accord with rls- much more likely neuropathic issues as diagnosed by one of your consultants. I'm surprised the Gabapentin didn't help there. That's why I asked about the Paracetamol.

    Opiates might be the next step, if you can get them prescribed. Tramadol ER or oxycontin can be very effective.

    Another approach is to look at sleeping pills such as Ambien- but not good for long term use.

    The last matter to check is that you're not taking anything that is causing your issues- foods or medicines. If you read through the last few weeks of posts- there is quite an amount of info on these.

    All the very best for you in the future.

  • Gabapentin gave me side effects that were worse than RLS!! Unfortunately I react to quite a lot of drugs. I wonder if it is possible to have both conditions at once!? The only prescribed medication I am taking is clonazepam for Burning Mouth Syndrome. I also have Tinnitus, so have to be careful with drugs that aggravate this. The whole situation is affecting me a lot. 😟

    Much appreciate your suggestions !!

  • Clonazepam is a rls medication- usually given with some other such as Gabapentin.

    Doesn't sound good if you react to that!

    I still think there is more going on in your system that is having such an effect.

    Good luck.

  • Hi Buci,

    That sounds like an unpleasant concatenation of symptoms and I must say I had similar thoughts to those of Madlegs. It sounds like you might have two different issues going on. Do you get the urge to move in response to the crawly sensation - a need to move - usually the legs - that builds up as the crawly sensation develops and eventually can almost catapult you out of bed in a 'jack-in-the-box' type movement?

    Have you been prescribed any dopamine agonist drugs (eg ropinerole, mirapexin, rotigotine)? Have you had your serum ferritin levels checked? Many with rls will typically have low serum ferritin (you get this from a blood test but you do need to ask for the actual number - usually you will simply be told that you are 'normal' which is an exceptionally wide bracket and not much use to an rls-er) and difficulty keeping their iron store stable. I found bringing up my iron levels using oral iron had a dramatic effect on my symptoms.

    It is hard to feel positive when the medications you have tried have been ineffective for whatever reason but there is a good regime out there for almost everybody and plenty of options to try.

  • Hi Involuntary dancer- what a great pseudonym, by the way- very appropriate!!

    No, luckily the 'strange ' feelings don't make me want to leap out of bed, only the occasional cramp does!!

    I was prescribed ropinerole, but was scared to take it having read about the frightening side effects it can have .

    I think your idea of having my serum ferritin levels checked you are right, when you contact the surgery about most tests , they usually just say normal or satisfactory !!!!

    Will have that done and post results. Thanks!

  • Hi

    In answer to your question I have small fibre neuropathy, which is a type of peripheral neuropathy, and RLS. One of them, or both?, cause a great deal of pain. I take 1800mg of Gabapentin which helps and am sorry you cannot tolerate this. I also take 200mg of Tramulief which helps with the RLS. I have also been taking clonazepam but am weaning myself off this in preparation for a sleep study at the end of the month. A slightly pointless exercise in my view but it is what the neurologist wants.

    Best wishes

  • Thanks Martino. Thanks for the info. I do get the creepy crawly feeling if I try to rest during the day, and at the same time numbness in my toes and difficulty moving them, but only get the continuous PAIN from about 4 in the morning, till I get up and then the pain stops. I wondered if it could even be a Vascular problem, but when I suggested this to all 3 of the neurologists I have seen , they all seemed to dismiss the idea !! Hope your sleep study proves interesting . Good luck

  • Which part of UK do you live in, I went to an amazing neurologist, she made me feel so comfortable with her, and at last someone who understands the RLS, it was an amazing came out of this appointment feeling so much happier, due to see her again in July, but can ring her secretary anytime she is working. Amazing. Hope you get some decent help soon.

  • Very glad for you!! Can you tell me the name of your Neurologist please. ? If you would rather not, I will completely understand !!

  • Dr anderson at victoria infirmary newcastle, she did a talk at RLS AGM last September, she was very good. You can get your GP to refer you. She is a specialist in sleep studies.

  • Hi Shaft . Thanks for info. I live in Kent. Before I consider referral, would like to know WHAT help or info etc etc she gave or suggested to you?

  • She has me on pregablin, I had previously been on ropinerole & got augmentation. She is has added rotigotine 1mg patches but that can go up if need be. She is going to do sleep studies, also my ferratin was only 49, she said that is not high enough in RLS. She talked about an iron infusion but will discuss that in july. Read up on rls site take information, go in with info in hands. Tell them everything about you, say you are aware they are Dr but can't be expected to know everything. I am also lucky I have a medical background. The other specialist unit is kings college hospital london. But i beleive they have a long waiting list. When you are armed & knowlegable about your condition good luck if you need anymore info don't hesitate to contact me. I won't be avaliable today from now. Cheers shaft1952

  • Shaft was interested in Dr Anderson talking about the iron infusion only heard of one other person in the UK getting an infusion for RLS

  • Not definate about the iron infusion yet, she said we would look at it in july. Depending on various things .

  • Shaft, have you ever tried OTC iron. I recommend ferrous bisglycinate 25mg capsule, taken once a day - at night - before bed on an empty stomach. Some (not all) people get relief with that very first iron capsule, while others get relief after several weeks or months of taking the iron. And some get improvement from iron but not complete relief and some not at all. Since your doctor wants your levels higher and you clearly do NOT have iron overload then I think it is a good idea to try this before any infusion. You can order the bisglycinate on Amazon..

  • Have been taking suppliment but not improving, not definate i will have to see what comsultant says in july.

  • Really, what kind of iron? I tried ferrous sulfate but that didn't relieve symptoms the way the ferrous bisglycinate does. Plus I have to take it at night in order to relieve symptoms. When do you take your iron and of course what kind is it?

  • Just checked bioavailability of different iron supplements:

    Ferrous fumarate - 33%

    Ferrous sulfate - 20%

    Ferrous gluconate -12%

    The article didn't include ferrous bisglycinate but I recall reading that it was somewhere around 40%.

    Taking iron with food lowers those numbers even further and taking iron during the day, rather than before bed, makes it less likely to have that strange almost magical ability to relieve RLS symptoms (in some people) for the night.

  • I have been taking iron glycinate, but not making any diference cheers shaft1952

  • Thanks for your info. Shall be interested to see what my levels are next week. If my ferritin levels are not higher than 49 will progress to some supplements to try. Maybe a referral to Kings might be an idea, even if there is a long wait!! I have been trying to sort myself out for years, so another wait won't make much difference to the overall progression of treatment. I have almost got o the stage of giving up, but my husband says I must keep trying every pathway , which is why I have joined this site!!

  • Good luck hope you get to someone who knows what they are talking about & get proper help shaft1952

  • Buci you are closer to London than Newcastle where there are a couple of RLS experts. Let me know if you want names

  • Hi Pippins2. I would be more than grateful to have a couple of names of RLS in London. Thanks for your help!!

  • Buci

    Dr K. Ray Chauduri at Kings College Hospital London ( one of if not the UKs top RLS expert so a looooong waiting list )

    Dr Huys at University College London (UCI) Read good reports about him

    Good luck Pipps x

  • Hi Pippins 2. Thanks for that. Will certainly give a referral to Kings if local help fails!!!

  • I meant to say OR Dr Kay!!

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