Others don’t understand

[Marlayna]

I know we’re all usually talking about our meds, but I’m wondering how everybody is faring when trying to explain to others what we go through.

I’ve had my adult children question why I take oxycodone. Some seem to understand, some are very judgmental. RLS can start at 10:30 am, and is why I’m spreading out the drugs to get through day and night now.

I spread three 5 mg throughout day and night so you know I cannot be impaired. I’m a writer by trade, which requires serious sobriety and concentration.

The pharmacists seem to be judgement as well, lecturing me on my “serious opioid prescription.”

Being the (non alcoholic) daughter and mother of an alcoholic, it seems to be life’s cruelest joke that I need such serious medication just to pass the night in a normal way. .

Tried one night without it recently to see if I could and nope, even with Valium was up at 2:30 with the creepy crawlies in my hands, wrists and shoulders.

I wonder if anyone else faces this kind of judgment?

[Madlegs1]

This came up recently especially in regards to pharmacists.If it happened to me, I would push back firmly.

Ask them if they have ever experienced RLS?

Do they know anyone with the affliction?

Would they be interested in learning about it?

Give them links or printouts of the various papers on opioid treatment for RLS. (Buckfeurer et al.) (Mayo algorithm)

Finally, you could remind them of their duty of care to customers - respect etc, etc.

Family is trickier and more disappointing for you.

Conversation with them around where their feelings originate (grandmother experience?) or current opioid hysteria in USA?

Again, the links mentioned above may help them understand, but sometimes people close to us have very personal agendas, quite apart from their views.

All the very best and good luck.

[Marlayna in reply to Madlegs1]

great advice regarding the pharmacist, and I will definitely adopt this approach when the next go around appears. Thank you.

[Joolsg]

I suspect it's much worse there in the USA because of the opioid crisis caused by the Oxycontin Sackler scandal.Here in the UK, most members of the public don't know what Oxycontin is.

However, there has recently been someone who came across prejudice from pharmacy staff when collecting a prescription. It does happen.

I would simply ask them to look at some webcasts by top doctors.

Dr Andy Berkowski's site is excellent.

Also, Dr Winkelman runs an opioid study for RLS patients at Massachussetts General Hospital.

Ask your children to look up both as they may well inherit your RLS and need to know more about the disease. Iron pills/infusions are now first line treatment but don't work for everyone.

relacshealth.com/

massgeneral.org/rls-registry

[Marlayna in reply to Joolsg]

thank you. I really hope my children don’t inherit this condition. I have two daughters and two sons and one daughter already has a child and studies have shown that the risk is increased being a female and with each pregnancy. I have tried to talk to them about it but I think it’s one of these things you just can’t understand unless you feel it.

[Joolsg in reply to Marlayna]

Very true. Suggest they all get their serum ferritin levels checked. Raising serum ferritin above 100 can make a real difference to RLS. After having children, most womens' iron levels are depleted. Also, many children with low iron may have undiagnosed RLS. It's often mistaken for ADHD due to lack of sleep causing poor concentration and behaviour.Maybe bring that up with your children.

But you're correct, no one can understand this disease until they've lost night's of sleep and experienced the unbearable sensations.

[Hidden]

Hi Marlayna, have you stopped the HRT yet and gone back to the nightly iron?

[TheDoDahMan]

Being unable to sleep is so much more unhealthful than any medicine you take to alleviate that; there's just no comparison. After all, it's not as though we're getting some sort of "high" from our medicine. Don't let ANYONE try to shame you for a condition that is not remotely your fault. My best wishes for love and peace to you.

[Ticki]

yes, I feel it’s a government thing here in America and the pharmacist are backing it up! I’ve got children a son who has it and understands and a daughter who has it and thinks I’m a drug user. So I can only hope she never gets it worse as mine is very serious. This is only made harder by the fact most doctors and normal people don’t understand how horrible it is and I doubt they ever will. It’s a narrow road we walk ( endlessly).😞

[Heavyd65]

it’s a slippery slope when it comes to taking oxycodone. It’s one of the best medications for treating many chronic conditions. I have the same problem. I’ve been taking 15 mg at night and it works quickly with little side affects. Kratom also works quickly. Big pharmaceutical companies will never develop it into a manufactured medication because they can’t patent it…just like pot. I’m hoping to get on methadone someday. I would like to try it. It seems to be another great treatment for RLS. Since the big opioid epidemic I’m grateful to be able to be prescribed the 15mg oxycodone medication I’m currently getting. I can’t control what people think of me. What someone thinks of me is none of my business. Taking medication doesn’t define me a an addict. You cannot will RLS away anymore then you can will diarrhea away. I’d you don’t have our disease you don’t understand the impact that it effects in our daily lives.

[Lilcatfeet]

There seems to be no end of people, including those who should know better, who feel compelled to not only judge, but to express disapproval of those of us who are forced to use opiates for RLS or chronic pain, which, after all, is their primary purpose.

Do these holier-than-thou types think we choose this path?

I lost 3 “friends” who confronted me about my “drug addiction “ based on my taking 3 five mg Oxy for chronic RA and neuropathic pain as well as RLS. And while seeking a new GP after my long term PCP retired I was subjected to a 20 min lecture on the dangers of narcotics to the elderly.

In his practice, only those with terminal cancer are prescribed narcotics.

So those of us who do take them responsibly and mindfully in order to live anything resembling a normal life are subject to this mistreatment because of those who abuse them. Consequently, we are also victims, in a different way of the current opioid hysteria.

[Boomerang]

hi Marlayna, I’m a fairly fit 81year old who has suffered with restless legs and ignorant doctors since I was 16. My father suffered and I have unfortunately passed on to my 53 year old son also. It is a very difficult complaint to describe to people who have never experienced it. I have been subscribed and taken All the different medications. I nursed my husband through Parkinson’s Deasease for years until he died and I consider the 2 complaints similar ( in that they are both dopamine related). I am about to have another trip to Europe and have to take SO many medications that customs believe I’m a ‘dealer’. Many people have given me advice on medications, have of which would be fine if I could A: drive safely/legally the next day or B: play my sports or an intelligent game of bridge. My partner is a retired doctor who does a lot of medical reading on the subject and has come up with nothing! Good luck and we should contact each other (probably in the middle of night whilst walking the house route) at some stage to compare notes!!! Cheers Ros