Thank you all of you who deVote time to help others who suffer from RLS. I don’t know what we would do without you. The suicide rate among those who have RLS is very high. YOU have saved many lives, I’m sure, In fact, I am one of them. You have given me hope and so much more. You know who you are and you will be blessed for what you do.
R LS is a nightmare and the worst possible illness because of the inability to sleep. I only pray that the medical profession would take it more seriously. I go without sleep night after night and I get no help from doctors, They want to prescribe something that will make RLS worse and when I don’t accept the prescription, they get upset and don’t prescribe anything anymore , Too tired to find another doctor, and don’t know how, The only help and hope I get is from all of you helpers, May God bless you.
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Josana13
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Unfortunately I don't have any names of knowledgeable doctors anywhere in the state which does not mean there aren't any. You might want to make a post to ask if anyone on the forum knows of any.
Thank you, Sue. My doctors get angry when I tell them a medication causes RLS. My primary said that the medications he has prescribed do not cause RLS. Not only do my Health Unlocked comrades say they do, but I also tried a couple of them and was up all night with RLS. He said he could do nothing for me, so he sent me to a psychiatrist. She prescribed an antidepressant, Citalopram. I told her it made my RLS worse, no response. Now I have no doctors. I will probably get the same treatment from any doctor, unless they know about RLS.
And doctors think they know it all! As I mentioned above, do a post asking if any forum members know a good doctor in New Mexico. Also call any neurologists and ask if they are knowledgeable about RLS. If you need it, ask if your doctor will prescribe Wellbutrin of trazodone for the depression as they are safe for RLS.
Hello Josanna13. I’m so very sorry that you are suffering so badly and that your Doctor isn’t being at all supportive. I’ve come across this in England, not related to RLS where I questioned a Doctor and he got very impatient and it ended up with him saying, please yourself, he was intolerant I was being a nuisance and slowing down his flow of patients. I spoke to the senior partner about this and since then that particular doctors attitude has completely changed.
Anyway that’s not helping you. This has to be your choice but many people on this forum, me included, have turned to Kratom Red Vein Powder but it’s not legal in Britain but I’ve looked on line and currently it’s Legal in New Mexico and can be bought on line or from various stores like Smoke Shops, Vape Shops and Specialty Shops. Kratom is legal in a few states in America but not everywhere and according to the website I looked at New Mexico had no restrictions. I have only used it in desperation it not being legalised in Britain but found it works very well stopping my RLgs and allowing me to sleep without jumping out of bed at all hours of the night and walking around the house. I only mention this as you’re in a very bad place with RLS and as I said before it has to be your choice but if it prevents you becoming a statistic as you noted in your post then it’s an option. We are of similar ages so have enough common sense to treat Kratom with respect. I usually take half a teaspoon put in pan with mug of boiling water simmer for a couple of minutes and strain into the mug through a tea strainer. It tastes disgusting 🤢 but if you add a squeeze of fresh lemon and a good amount of honey it’s not so bad. You’ll find it starts to work in 30 - 40 minutes but suggest you take at night as will start to relax you and you should get a much better nights sleep. My thoughts are with you Josanna13 🙏
Josana, I really feel for you and want to urge you not to give up. I know what it's like to be so tired and mentally foggy that it is difficult or impossible to advocate for yourself in the medical system. That happened to me a while ago and I did what HipHop recommends and think it may have saved my life. I thought suicide was the only solution and contemplated it daily, but the kratom at very low doses--just half to one gram at bedtime got me enough sleep so I could then start reading up on RLS and pushing for the right treatments and I no longer take kratom because I am now prescribed opioids.
The RLS Foundation in the U.S can send you free literature that very clearly and scientifically states that SSRI antidepressants (e.g., citalopram) make RLS worse. They also have an RLS "medical card" that lists all the meds that should not be given to RLS patients.
TO DO: Send an email to ClaraSchlemeyer at clara@rls.org and explain your problem with doctors and ask her to send you some medical alert cards, the information booklet for primary care physicians, and the Mayo Clinic Proceedings article on management of RLS. She is very nice and caring and will do this for you right away.
At the very least, your doc should be willing to substitute Wellbutrin XL in the morning (it's somewhat energizing) or trazadone at bedtime (it's sedating) for your citalopram.
See if you can get a referral to a sleep specialist, preferably a neurologist, not a pulmonologist, or else a general neurologist. i suspect your PCP would be happy to pass you on to someone else to manage this problem.
Please keep us updated on how you are doing. We care.
Thank you so much for the fantastic info. I will email Clara. I have an appointment with PCP this week. Will ask for referral. I looked up the Neuros and there isn’t one that handles RLS. Going to have to go to Arizona or Colorado. I never took the Citalopram, and am on 150mg of Wellbutrin. Thank you so much.
BTW, don't say to doctors that certain medications "cause" RLS or you will certainly be dismissed. Explain that they "exacerbate" or "worsen" your RLS and you may be taken more seriously.
I’m so sorry Josana. Please don’t give up. Things will get better eventually. Sue’s idea about making a specific post in this forum is a good one. And I completely agree…this group saves lives. Mine is also one of them. Hang in there.
Even if you don’t find a good doctor who has up to date knowledge about RLS (I can’t find one either!), maybe you can find a doctor who will at least be open minded and listen to you. I feel like I sort of dictate my own care-which is ridiculous and makes for a lot of work on my end, trying to figure things out for myself, but I just tell him what I need or want to try and so far he does it. It’s nowhere near ideal but it’s better than where you’re at where you can’t get any help or compassion from the providers you had/have. I am so sorry. If driving to AZ is an option for you, I’ll be happy to give you my doctor’s info.
everything said is so true and it’s Incredibly hard to hold your head up when your so tired. We are worth all the effort it takes to fight for ourselves. My prayer’s are with u and Usable solution to be found for you.❤️🩹
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