Back after 2 years

Mums legs have started again after 2 years off an we are at our wits end. Mum is 85 and has had RLS on and off for about 12 years. We thought we had cracked it. Weened her off the Anti D's and it went away. Now when she is even more frail than before it comes back. Mum has Advanced Macular degeneration (almost blind) a knee so bad they will not operate on it. Dead feet from Diabetes. A crumbling coccyx (base of spine) Oh and her kidneys are packing up due to the Metformin for the Diabetes. She can barely shuffle around but RLS does not care, it is the most evil of diseases. I think our problem was to change her drug cocktail. We changed it on doctors advice that she needed to come off Metformin and reduce her Glickazide because they are damaging her kidneys. She started on a new form of Diabetes drug as well. It is a trial and if it worked she would avoid having to have Insulin injections.

So going back to the Doctors (when we can actually get an appointment) and I think our best bet is to return to whatever drug cocktail she was on 3 months ago when her legs were good. I always have to lead the Doctors when it comes to RLS because they are merely aware of it. No one can truly understand unless they have it or have lived with it. I know that mum would rather expire from Kidney disease than suffer another night of RLS.

If anyone had ever died due to RLS and had it put on their death certificate then perhaps the drugs companies would take notice. I would like to know how many people died or had their lives shortened by having RLS as a secondary cause of death, probably none also.

15 Replies

  • Oh my heart goes out to your mother. I'm 71, and control my RLS with a mild opioid called kratom, that I order from the internet. It's a powder, from the leaves of the kratom tree, and there are many places on the internet to buy it. Just do a search. I put a half a tsp. into a little cup of orange juice and let it dissolve, which takes about 20 minutes. Than I drink it. I think the Red Lea Borneo is best for RLS. This might hold her anyways until she gets another doctor appointment.

  • Thank you so much. I will look into your suggestion. Its nice to know that people are out there thinking of mum.

  • Tramadol is a "weak" opioid with antidepressant properties (serotonin and norepinephrine reuptake inhibitor) that is effective in getting rid of RLS. Might kill two birds with one stone.

  • I am so sorry for your mum glad she has someone to stick up for her,I am 79 had rls years now on Tramodol it's the best med I have had for the prob, I would realy recommend it so please give it a go,xx

  • hi beady3 as you can see its 4.30in morning cant sleep, you are quite right about the tramadol its brilliant for RLS but it made me itch all over, if I could cure the itch(taken Claritin but doesn't do a thing)I would take it all the time.

  • Oh mumscrazylegs, my heart goes out to your mum. When you read on here how many people suffer with it from age 10 all the way up to your mums age it's an awful disease. I am 59 and had it since my twenties and last year I had a hysterectomy and things have been better but I take oxycodone, pregablin, cocodamols, and pramipexole so I don't know what to recommend . What country do you live in? I hope and pray you find some kind of relief for her. Hugs Jimeka x

  • My heart goes out to your mother too.

    The only thing to do is go back to the GP and get some help via medication. I once went on Internet and a lady in USA said her RLS was worse when she ate dairy. I then found that not eating/drinking milk or milk products reduced my RLS but I still needed my medication. Now two years later I am completely lactose intolerant but I have reduced my RLS medication considerably and my life is much more comfortable. Giving up milk is easy and worth a try. There are soya products and lactose free milk available. Unfortunately you have to read the labels of all processed food and things like biscuits, cakes, soup and sauces can all contain milk, whey and lactose.

    Also at 85, is your mother drinking enough? I recommend 2 to 3 litres of water a day but this can be replaced by some tea or other juice if she finds it difficult to drink water all the time. I find that if I don't drink enough then the RLS will start.

    I know that some of this community will not agree with me but RLS does not affect everyone the same way and what works for one person will not work for another.

    Also if you are not happy with your GP you can change to another practice.

    RLS is excruciatingly painful but it is not life threatening so there has not been enough research into it and drug companies are only in business to make money.

    I send your mother my best wishes for relief in the future.


  • Dairy can trigger RLS? I had no idea. So you have to wonder- is it the lactose (there's lots of milk sugar there), the casein (the protein that can also cause allergic reactions), or maybe even the hormones that the cows are fed? They say that often RLS will start in young women during pregnancy, so I have to wonder about a possible hormone connection, but I haven't seen much on that. Particularly since the majority of sufferers seem to be women. But they put hormones in meat, poultry and dairy, so if hormones could be a problem here, guys would be ingesting the stuff too. Then there's the xenoestrogens everywhere in plastics, herbicides, pesticides, etc, etc, etc...

  • There are days and nights when I think RLS will be the cause of my death---or I just feel like dying to get some relief. This stuff is no joke. I feel for your Mom.

  • My thanks to you all for your advice and comments. I don't think she has tried Tramadol yet so may see what doctor think's on that. I am sure she doesn't drink enough water as well. Many Many thanks.

  • Hi I can remember you! Remember you saying that you read out a piece I had written about how RLS effects the life of a sufferer out to your mum as she couldnt see to read it.I am so sorry your mum is suffering again.I would also suggest something from the painkiller family maybe try the weakest opiate first which is Codeine, If that doesn't help the next step up is Tramadol.Do let us know how your mum goes on .

  • Yes I remember. It was a very strong piece. I saw somewhere that they are looking for people for a TV prog on RLS. Perhaps they read it.

    As for pain killers. Afraid mum is already on the strongest Morphine patches for her back problems, plus other Codeine pills. Her legs have calmed down a bit since last weekend but you its impossible to trust RLS.

  • Ok just checking she is not on anything else that could be triggering such as antihistamines or anti sickness meds? Unfortunately nothing works 100% of the time but I am pleased that at least for now your mu, has some improvement.Yes we are all waiting for news on the tv programme .

  • I know how your mom feels, it is evil. It doesn't care how tired you are in fact the more tired you get the more it gets you. most drs. don't get it. if you can find one that cares enough to research it, then you have found a great dr. I have been using pure magnesium oil with good results.

  • oh your mums in a right old mess, I know what you mean though about RLS, if someone could come up with a cure they would be millionaires,& yes you are quite right about DRS they don't seem to have any knowledge on RLS or don't seem to care,they just keep dishing out drugs & then send you away hoping they have given you the right meds.

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