As I understand it most people suffer at night - I am exactly the opposite and have pain all day but once resting in prone position the pain virtually diasppears.
Does anyone else have this pattern of pain and relief?
Re medication. I have been perscribed the dopamine mediactions by my consultant and they made me very ill. Also been on Gabapentin up to 1200 per day and apart from making me very sleepy and spaced out, there was no pain relief. Also been given Clonazepan, half a tablet of the lowest dose but that also made me feel ill.
I do not tolerate medication very well at the best of times unfortunately.
Any comments or advice would be most welcome. Thank you.
Thank you for getting back to me, unfortunately on the first line of your answer is visible, not able to access the remainder so could you resend it please.
It started in my foot over 2 years ago and didn't go to GP for some time as thought it was something & nothing & would just go away - it didn't. Eventually referred to consultant neurologist who has consistantly said it is RLS.
As I always react badly to most/any medications and I know from experience that if something is going to work - it will pretty quickly.
Put on Ropinirole - lowest does possible and had headaches 24/7 and several migraines ( which I do suffer from and know how to manage them) so after 3 weeks stopped that. Then I was tried on Pramipexerole - lowest does - and after one dose I virtually collapsed, it was terrible,nthought I was going to die - so took no more of that.
Then put on very lowest dose of Gabaptentin and did not have any effect after 2 months so stopped taking it.
It was a while then before I saw the consutlant again who then said I needed to try Gabapentin again despite the side effects and gradually increase dose which I did until taking 400 - 3 times a day. Had side effect of terrible sleepiness during day, felt very lethargic and felt as though I was only operating on 3 cylinders. Bit like a zombie.
Then I have just tried Clonazepan. One half of the lowest dose and only took it for 4 days as felt my head was full of fog, balance not good and very disorinetated as well as very sleepy.
So waiting to see consutlant again in 3 weeks time.
I have had all the blood tests to check for everything and all normal. Had a nerve conduction test - all fine plus test for reactions - all fine and also circulation and all fine.
I only get the pain in my foot during the day - it gets worse as the days progesses. When I get into bed it just takes a while to settle and then its fine and I have no problems sleeping and never have had. Nor have I ever had uncontrolable limb or foot movements.
I am not able to take Ibroprofin or similar as not recommened with hypertension medication but do occassionally take 1 paracetomel which helps a little. Do not want to continually take pain killers if at all possible.
I don't think that sounds like RLS. Are you able to sleep without your foot disturbing you? Do you have an irresistible urge to move? Do you get relief from the pain when you walk around?
I would see a different doctor and get a second opinion.
Thank you. I think I will get another opinion as I have always had a gut feeling that it was an incorrect diagnosis. Seeing consultant in a few weeks so will discuss and then decide on my next move.
I started with just left leg RLS. Eventually it was also in the right leg. Usually I have L leg 1st, it stops and then a little later the right leg starts, then settles down and the left leg may or may not start up. Rarely are both legs painful at the same time, but when they are they are individually worse than usual.
Is your consultant an Neurologist? Your symptoms do not meet the criteria for RLS based on my knowledge of the condition. I've had it for 16 years and it only kicks in, pardon the pun, in the evening prior to bedtime, with occasional short lived occurrences during daytime. Hope this helps.
I did email him and gave him a fuller version of the message to you. He gave me various criteria to check my symptoms but basiscally said it did not sound like RLS. The question is - if its not that - what is it and where do I start with finding out. Could be neurological, ortho based or something I have not thought of. Will have to get someone on board who is experienced and open minded. Thanks for you input.
There are a number of neuropathic conditions that might apply to your situation. MS and diabetes come to mind among other possibilities --- but I'm certainly not any expert.
You may need to find a good neurologist - preferably from a teaching hospital- who is able to give you a full battery of tests- starting with a Full Blood Panel.
Thanks. Parkinsons & MS have already been ruled out and I certainly do not have Diabetes but someone from a teaching hospital is possibly the route forward.
I had an appt with my podiatrist and she has alot of experience. The following is relevant.
She had tried previously to remove a corn under the base of my foot and couldn't get near it as it was tender. To cut a long story short she has now discovered that it is a neuro vascular corn and is slowly treating it. The amazing thing is that the feeling of walking on sandpaper has disappeared, wonderful. So that was a different condition totally to RLS.
I have now seen the consultant again and told him about this. I suggested that perhaps my treatment /diagnosis was being led by this and maybe now that this was solved the RLS diagnosis could be reveiwed. I realised after the appt that he had gone onto another tack and neatly sidestepped this question. I wasn't quick enough and he certainly wouldn't want his diagnosis to be questioned - perish the thought that he might just be wrong!
Even with this new relief of some pain and though I do not fit some of the criteria he stills firmly believes that it is RLS.
I often have legs that feel like concrete and have mentioned this each appt but when I reiterated it this time he asked if it was both legs. I said that it was all in my information over all the appts but he must have forgotten.
Anyway I do not think he knows what to do with me as not on any medication, cannot tolerate any of them as highly sensitive. The side effects of all of them are worse that the pain.
So he has requested that I go for an MRI scan on head and neck and I have another appt with him in August .
We wait and see but in the meantime I find that some days are fine and some not but use distraction techniques ( activities that take my mind of it) when bad.
But I still do not have problems sleeping as settles down when I fall asleep.
Is there anyone out there that has it only in the day and not at nightime?
I think I maybe RLS is a bit like migraine - there are so many variations but all are migraines and not curable but hopefully can be managed.
I would be interested to hear views on all of this.
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