Family support for RLS

[Skifam]

This is my first post, but I have been following all the RLS posts with much interest. My daughter suffers from RLS and as her mom I’m just trying to understand and support her struggle. And what a struggle it is. She has been on all the usual RLS meds with nothing working except for the low dose morphine she is now on. The problem with that is staying with the prescribed dose because often it stops working and she takes more with the end result of no meds at all for 1-2 days until her prescription renews. This, of course, puts her into withdrawal. I have also noticed that there is not much discussion of family support. We are from the US and her diagnosis is met with much skepticism from other family members, from disbelief to outright denial that it’s all in her head. This has been very difficult for her to deal with and only adds to the pain of RLS. After reading some of the posts, I am convinced she suffers from the augmentation mentioned by many of you. I will discuss this with her and have her discuss it with her doctor, who is very supportive. I would like to thank all of you for sharing your struggles as it helps to know you’re not alone.

[Madlegs1]

You've pretty well diagnosed the problem yourself.

Major challenge is finding a doctor who knows much about rls.

You need to educate yourself- which you've done- and then educate the dr.

Good luck with that.

[Hidden]

That’s really tough not having the support of family members, and to be told something as concrete as «it’s all in your head» is downright painful. I had an attack of the legs at church one time while visiting my mother-in-law, where I had to walk around /move in place the entire time. At the end of mass she met me at the front and said «we’re all just tired». Ummmm....yeah, that’s it. I’m tired. I had to bite my tongue to keep from saying something really nasty.

What is your daughter doing to help herself? Maybe there is something I can help with (ie. if I can suggest something she hasn’t thought of)

Something that was recommended to me was a book by Toni Bernhard entitled «How to Live Well wiith Chronic Pain and Illness». It includes a section for family members and caregivers, where it talks about how they should respond (what to say,, what not to say, what the person with the illness wants them to understand, etc.). You can find it at Barnes and Noble. May this would be of interest to your daughter? I am reading it now and it has helped.

Good luck to her!

Jessica

[involuntarydancer]

I have found the inability of many non-sufferers to appreciate the difficulties presented by this condition to be one of most awful things about it. On the one hand, you are in misery with this awful creepy crawley urge to move waking you up all through the night, then dealing with the exhaustion and side effects of the treatment drugs. Then when you try to explain why you are below par or not able for things like you used to be, people dismiss you with tales of how they overcame their insomnia and the inevitable ‘it’s all in the mind’/‘mind over matter’ type quotes.

It doesn’t matter how well it’s meant it is woefully alienating. That is why I found this forum so very uplifting when I found it. Not only did I get access to better information than anywhere else (except other Rls fora) but I found understanding, acceptance and support. It helped me to cope with the lack of understanding elsewhere.

So far as your daughter’s augmentation is concerned, is she on a dopamine agonist (ropinerole or pramipexole) as well as the morphine? If so she might well find that the low dose of morphine would suffice for her symptoms if she eliminated the dopamine agonist. Unfortunately eliminating a dopamine agonist is a VERY difficult process. It would be helpful if her GP would temporarily increase the morphine dose when she is going through the worst of it. Not easy to get additional opiates in the states at the moment though ...

[Skifam in reply to involuntarydancer]

Thank you all so much for your replies. It helps so much to know you’re not alone. My daughter is only on the low dose morphine at present which does work. However, her tolerance point is very high so at times it does not work at the low dose and she ends up taking more just to be able to function at her job. Of course, then she is shorting herself on her prescription and ends up running out. Her doctor refuses to increase the dosage or adjust the prescription as well. It is a very difficult time in the US at present because it is very easy to get labeled as “drug seeking” and dismissed. Believe me, she is NOT seeking these meds to get high, only to find relief. Perhaps though her doctor may be willing to prescribe a small amount of tramadol for those times when she may need it. It is an avenue to explore. Both my mother and sister suffer from MS, so I know firsthand the effects a chronic illness has on the soul. As a mom, I just want to support her and be there as support. Thank you for all the help and I will look for the book suggested for caregivers at Barnes and Noble - I have an E-reader so it is quite easy to look for it there. This forum has been so helpful and thank you all for listening. Just as an aside, I live in a county in Wisconsin that has the highest rate of MS in the country. I firmly believe it can be all traced back to pesticide use as this area is the top ginseng producer as well with heavy pesticide usage. My daughter’s doctor is classifying her RLS as a neurological disorder and this would fit in with the heavy pesticide use. I would also be interested to know if any of you have had pesticide exposure in the past. If this is not an appropriate question for this forum, please ignore as I do not want to disrupt the good work of this forum.

[LotteM in reply to Skifam]

A while ago new guidelines for the use of opioids in treating RLS were published with many of the leading rls-researchers aa authors:

mayoclinicproceedings.org/a...

Someone - don’t remember who it was - read about it and posted about it. You and/or your daughter’s doctor may find the information useful to try and find the optimal treatment for your daughter. Because maybe morphine isn‘t the optimal one.

I do hope she find relieve.

Have you seen the post and papers about dipyridamole? It may be an avenue to discuss with the md and try... By the way, ‘chapeau’ for being such an understanding and supportive mum. 👍🏻

[involuntarydancer]

Interesting theory about the pesticides. I don't think I have had undue exposure to them but there is no knowing for sure.

[Ureshi17]

What a wonderful mum! She’s very lucky to have your support!

That’s interesting about the pesticides. As a teenager growing up for several years on a farm, I helped my Dad spray weeds using the pesticide 24D.. This is the abbreviated name. I developed RLS in my late teens .. and I’ve had it for 30 years now.

There are several studies which link pesticide exposure to Parkinson’s disease.

[Ureshi17]

I just looked it up .. 2-4-D is 2,4-dichlorophenoxyacetic acid. It had been banned now in several countries.

[Ureshi17]

I had a quick Google and the pesticide / herbicide 2-4-D appears to be linked to Parkinson’s and potentially other neurological disorders including RLS.

pdfs.semanticscholar.org/1f...

[Retren]

the problem with the condition is if you do not have it the sufferer is mostly unable to describe it to anyone. I have had it for 70 odd years and my sons still do not think it is a problem despite the fact I have it every day and severely plus impeding my life style and diet. How ever I just try to carry on and ignore the comments as I know what the condition does I hope somewhere along the line a solution will be found. in the meantime I thank goodness my offspring have not inherited this scourge.

[Retren]

the observation about pesticides is interesting this neighborhood used to spray constantly plus there are large areas on the area of breast cancer . Inhave had RLS before any of this but trace it back to a vacation in France when it was customary to give everyone including children wine at meals which I immediately had a problem with. years later I read an article that anti freeze if you could believe had been added for some reason.who knows? in any case my family have a history of neurological problems so count myself lucky it is RLs and not something worse.