Some 10 years ago had Polymyalgia Rheumatica, on long term steroids which
wrecked the skin on my legs, ie ver thin and slightest knock resulted in an abrasion,skin would have to be pulled back and steric tripped, couldn't be stitched. Didn't help that by then I was mid 70s. Then finally that got better but was left with Fibromyalgia, and put on Prozac to help deal with pain not because I was depressed, although by this time I was 79 and lost my husband! However coped and got on with life, do a lot of voluntary work. Met another man 2 1/2
years ago through him wanting a dance partner as widowed, so I was happy dancing as well and it was good. Now we are together properly which is great in our mid 80's. Restless legs started before Christmas, thought it was peripheral Neuropathy, had bloods etc for diabetes etc, but nothing found, in fact pretty
healthy for my age. Taken off Prozac, put on amitriptaline at night. Saw different GP and he thought RLS, and put me on Pramipexole , also had a chat with physiotherapist, given exercises etc. Obviously with lock down no appts.
available with neurologist, vent privately, very little exercise, no dancing. Can't complain about attention, but think some of my problems at night could be made worse as my partner has now been diagnosed with bone Metastases and is waiting for chemo any day. Timing of all this is exact timing 7 years ago with my
wonderful late husband of 58 years. Try to be optimistic, but not easy in this lockdown, but at least not alone.
You said Zi had not written anything, think this will do for a very long time. Thanks for listening if you read it to the end.
Written by
leadingwren
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Thank you for sharing this. I'm sorry to hear of your situation. Sad to hear of your partners metastases, but I hope the chemotherapy, however and possibly hormone therapy can help.
As for yourself this must be hard to cope with and having previously lost your husband, the situation must be causing you some anxiety and this can be a factor in exacerbating RLS.
There are different reasons why people get RLS symptoms and different forms. "Primary" RLS arises from an inherited pre-disposition and usually occurs earlier in life. Some people suffer it from childhood.
"Secondary" RLS however arises from some other underlying condition (such as diabetes) and hence only occurs when there is an associated underlying condition.
It's good that diabetes has been eliminated as a cause of your RLS. However. diabetes is not the only casue of peripheral neuropathy (PN) and it may be the steroid therapy may have caused it.
It's possible thst you have PN, but really, if it was of any significance, you would have symptoms of it which you would probably have noticed e.g. itching, burning pain, pins and needles, numbness etc.
Thereare other things which can casue or worsen RLS which may be a factor in your case. Tgese are called aggravating factors or "triggers". Sometimes eliminating these factors can considerably improve the RLS.
Firstly, I note that you've been taking prozac an SSRI antidepressant (Selective Serotonin Reuptake Inhibitor). I understand that this is used for chronic pain and niot just depression.
It is more likely that prozac has causes yor RLS than PN!
I suffer primary RLS, but my symptoms were mild for decades until I took a course of a SSRI and my RLS became unbearable.
I note thst you're no longer taking prozac, which is good. However, recovering from the consequences of this can take some while.
Unfortunately, you now appear to be taking amitriptyline, a tricyclic antidepressant, again for pain.
Amitriptyline can significantly worsen RLS symptoms! Yiur doctior apparently isn't aware if this.
Anybody suffering RLS symptoms need to be aware that it is highly unadvisable to take an antidepressant. There are some that are safer fir RLS if really needed e.g,. for depression, but most antidepressants can cause or make RLS worse.
As well as antidepressants there are quite a few other medicatiions that make RLS worse.
Another factor is that there are various mineral and vitamin deficiencies that are associated with RLS and taking relevant supplements can help. These include iron, magnesium, vitamin B12, D and E.
Iron is the most significant of these.
If you have any kidney problems or are taking a diuretic then low potsassium may be a problem, but it's best to ask your doctor about potassium.
I note you are taking pramipexole. Thus can be very effective in controlling symptoms. Hopefully your doctor made you aware of the side effects and complications of taking this drug. You can reduce these by keeping the dose as low as possible and if it should fail to work and your doctor suggests increasing the dose, - DO NOT.
The lowest dose is 0.088mg OR 0.125mg, these are actually the same thing. If that doesn;t work it can be increased, but it's not generally a good idea to take more than 2 tablets.
There is an alternative!
Pramipexole, is one of a group of drugs known as "dopamine agonists" (DAs), but they are not the only ones that can be prescribed for RLS.
Another class of medicines, known as either gabapentin or pregablin can also be effective for RLS. Theye aren't licensed for RLS, but they are recommended.
In additon, although they can have some signficant side effects, as do the DAs, they have less risk of the complications caused by a DA.
Furthermore they are licensed and prescribed for chronic pain, particularly nerve pain.
I was prescibed amitriptyline for nerve pain and I found it to be not very effective. My RLS was severe at the time and it may have made it worse. I was switched to gabapentin and found this more effective for my nerve pain. I was taking pramipexole at the time but was suffering from complications. When I disciovered that gabapentin can also work for RLS, I started reducing the pramipexole and finally stopped it and my RLS improved considerably whicb shows it works for BOTH RLS and pain.
I would suggest then that if you wish, you discuss with your doctor stopping the amitriptyline and starting on gabapentin. After a while you could try reducing and stopping the pramipexole.
It's difficult to say, but having stopped the prozac, stopping the amitriptyline and taking supplements. you might not need any medication for RLS. However, you may still need gabapentin for your pain.
If your doctor finds it difficult to accept this you can refer him/her to the National Institute for Health and Care Excellence (NICE) guidelines for the management if RLS.
For your partner ; I hope you arer aware that there is an online community similar to Healthunlocked provided by Macmillan Cancer Support. There is a a community for prostate cancer which is very supportive.
Thanks for you interesting reply. I do take vit. B 12, also low thyroxine, and have bought magnesium which I think has helped. I have got confused between RLS and PN. Originally I thought PN as it is like constant pins and needles, and originally GP thought this was correct ie sent me for many blood tests, all of which came back neg. when I saw a different GP he thought RLS. As said I am seeking an appt with a neurologist, God knows what these other specialists are doing these days?
Regarding Pramipexole I started very low, went up to six now slowly reducing, and my GP is great. However I think this issue escapes many people's knowledge. I recall my Mother being told she had neuralgia, and did end up in a wheelchair!
I think, just think, the mag. has helped a bit, but also take low dose of Zimovane at night, not sure if it is just in my head but think it helps me get some sleep.
My general health is pretty good really, I am always being told I walk well and upright, that's service life for you! I don't mean I was a maid but a Wren
long time ago!
Yes I am aware of Macmillan etc - ex District Nurse as well, but still happy to receive and consider advice.
I thought you had a defintite diagnosis of RLS, but now I'm not so sure you do ahve it.
Constant pins and needles does not sound like RLS at all.
The principal defining symptom of RLS is the "urge to move" also known as akathisia. Soemtimes this is accompanied by unpleasant, uncomfortable sensatiions which aren;t quite the same as pins and needles.
The urge to move, is just that, an irresistable urge to move.
There are five criteria for the diagnosis of RLS. The first is that you have the urge to move. If you don't have this then you can ignore the rest becasue you don;t have RLS.
If you DO have the urge to move then you still don't necessarily have RLS because you have to match ALL the criteria.
Three of the remaining criteria are qualities of the urge to move.
With RLS
2 the urge to move occurs or is worst when you try to relax, sit or lie down. It happens at rest.
3 the urge to move disappears or lessens when you do move.
4 the urge to move only occurs at night or is worse at night.
The fifth criteria is that it is only RLS if it cannot be explained by anything else.
From your description "constant pins and needles" this does not sound at all like RLS.
Typically people with RLS seek medical teratment for it becasue they are so restless and uncomfortable when they lie down and try to sleep that they can't get to sleep. Chronic insomnia is a strong feature of RLS.
I wonder how you're fidning the pramipexole, you do seem to be taking a signficant dose. Does it work : i.e. does it relieve your symptoms. If you do have RKS then it should work at a relatively ,low dose, if you were taking 6 tablets and it wasn't completely eliminating your symptoms then this is further indication that you do NOT have RLS.
Even "great" GPs aren't particularly knowledgeable about RLS and it seems yours isn't. Perhaps they're not familiar with the diagnostic criteria.
Your doctor may also be unfmailoiar with the properties of pramipexole. I may be biased but in some respects it is one of the worst medicines you could be prescribed for RLS.
One of the issues with pramipexole is that you can become physiologically dependent on it in a relatively short time, a few weeks. You must be careful about reducing the dose as this can lead to severe withdrawal effects. It depends how long you've been taking it. The longer you've been taking it, the worse the withdrawal effects could be. This is even true for small doses.
The usual withdrawal effects of pramipexole are worsening RLS symptoms. This might be informative because if you don't get any withdrawal effects, it may add further weight to the idea that you do not have RLS. You may still get withdrawal effects however.
Some people find they are completely unable to withdraw from pramipexole or any other dopamine agonist becasue of withdrawal effects.
Good that you've been referred to a neurologist.
Bearing in mind that your symptoms have only arisien recently, not much younger as it is for most RLS sufferers and bearing in mind the symptoms you describe, I think that RLS is a misdiagnosis and a neurologist might have more of a clue what's happening. Nerve conduction tests are a possibility. I hope a neurologist can get to the bottom of it.
It might still be worth considering taking gabapentin rather than amitriptyline and it would be better to wean iof pramipexol even if you do have RLS.
My GP thinks it is RLS. I constantly have prickling in my feet, all day whether at rest or not. At night it goes all the way up, sometimes past my knees, and it is almost impossible to sleep more than a couple of hours. The Pramipexole was started on a low dose, then told that six is the maximum, and I am starting to reduce very slowly.
I have been trying to get a private appt. with a neurologist, but as I said there are non available at present.
As I wrote, compare your symptoms to the diagnostic criteria. It's not easy for me to make an accurate judgment based on what you're writing. I can't definitely say one way or the other.
I can only say what the probabllity is and what affects that probability.
The main feature of RLS is the urge to move. On that basis alone, if you don't have the urge to move, it is highly unlikely you have RLS.
If you do have the urge to move, with RLS it will only occur or get worse when you're still and it disappears or is better when you move.. If staying still or moving makes no difference to your symptom, then it is highly unlikley to be RLS.
You do appear to be saying it's worse at night, which makes it more likely to be RLS but you still don't mention any urge to move, so even if your symptom does get worse at night then it's still unlikely to be RLS.
The issue with pramipexole is whether it's relieving your symptoms. Pramipexole is initially very effective for somebody with RLS and usually at the first dose it can eradicate all symptoms. If taking the pramipexole is not making the prickling disappear. even when you increased the dose then it's highly unlikely you have RLS.
If the prickling did disappear when you took the first dose then it makes it's probable that you do have RLS. Otherwise, it wouldn't work.
In relation to the dose, hopefully your doctor told you not to take any more than is necessary, i.e. if ONE tablet worked then do NOT take any more.
Conversely, if you reduce the dose and your symptom doesn't get worse, then again, it may not be RLS. If it does get worse then it may be.
I hope that makes it clearer what the likelihood of you having RLS is. You have to be a medical detective!
Thanks again. Regarding urge to move, I would call it movement by moving feet from ankles, plus squeezing toes etc! I will speak to my GP again, and will quote you but obviously can't just say "I read it on line"! If I quote you, what do I say? Are you a Neurologist, a GP or another type of consultant? Again many thanks for your time, very much appreciated.
Good morning, just to clarify, this online community is for people who have RLS. Members of the community are here because of that, nothing else.
Nobody is in the community is acting in any professional capacity. Even those who may have a health qualification are not here because of that, only because they have RLS, or think they have.
I am here as I have had RLS for nearly 40 years.
It's probably not a good idea to quote the community at all.
However you can refer your doctor to the web site links I provided.
One is the NICE guidelines for the management of RLS, the other is the validated diagnostic criteria for RLS. Your GP should accept these as authoritative, especially NICE.
It does appear as if you're convinced you have RLS and it might be of some reassurance for you if you were to have a confirmed disgnosis and hence could have effective treatment.
I'm afraid you haven't written enough to convince me that you definitely have, sorry.
You don't say if your symptom gets worse when you relax and better when you move, you describe it as constant.
Nor do you say whether the pramipexole works or not.
Your description this morning, "movement by moving", "squeezing toes", does not sound like the urge to move.
You mention feet and ankles and although there are some differences between people, it is restless 'legs' not feet and ankles.
I'm afraid if I was your doctor, based on the information you've given and NOT given I couldn't say for sure you have RLS.
Pragmatically, if you're taking the pramipexole and it does eradicate your symptom, i.e. it works, then you could choose to carry on taking it
If it doesn't work, then there's no point in taking it and it may do more harm than good.
It would be better if you could reach some sort of conclusion with your GP. Seeing a neurologist privately may possibly be a waste of money if they're don't have sufficient expertise in diagnosing and treating RLS.
Again thank you very much. I omitted to mention I went for acupuncture last year, however she insisted on massaging my lower legs although I said it made it much worse. Reading some of the
As well as RLS, I also have a neuropathy except in my case it's spinal. It has some symptoms in common with PN.
I have been to see an osteopath about this. He did some adjustments and he also gave me acupuncture. I found the acupuncture great for the neuropathy and it relieved some of my pain.
He also did some massage and this did cause some pain.
Neither had any effect on my RLS at all.
Sometimes these symptoms are due to lymphatic drainage or circulation problems.
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