Help please, I've lost all perspective

[[An...]]

On 01/10/2023 at 21:03, [[H...] said:

Hi @[An...], I wouldn't be here if it weren't for the RLS. Clonazepam was part of the cocktail of meds my doctor brewed up to ameliorate my RLS. Everyone here seems to have been put on a benzo for a different reason. A lot seem to have had trouble with anxiety, but not everyone, and not me. I can't say for sure, but it's possible that my RLS was triggered by coming off of Zoloft too quickly in 2007 or thereabouts. Before that time, I only had one instance of it during a long car ride. My daughter has had a couple of instances, but only when she was expecting a baby. My niece has had a few episodes when she's under a lot of stress, but not that often. So it's familial, but you can see that it's not severe in my family, so no one has needed treatment. Mine, though, is severe.

During my benzo withdrawal, the lines got blurred. I thought and still think that I had jittery benzo sensations that made my RLS worse, because suddenly, it would strike at any time! Couldn't sit with friends, couldn't sit to eat dinner, couldn't even sit in the bathroom. It was in my arms and hands too; I was wringing my hands all the time. Couldn't take a bath because I couldn't lay down that long and had to shower. 

I guess I'm often in a position when I am trying to tease out, is this RLS? Is this a symptom from benzo withdrawal? I asked a doctor about it and he suggested I go on opioids 24/7. I said thanks, but no thanks. I take as little as possible. Honestly I've not even been tempted. But the bedtime dose gives me one hour of peace before I fall asleep, and I've been thankful for that. It's not a particularly restful sleep and sometimes I dream of coming off of everything, but that's an RLS issue and I'm sure I've talked long enough about it!! Sorry for nattering!! But it's so nice to talk about something I can never talk about!

Wow, thanks for sharing @[Ho...]. This sounds very uncomfortable, even painful. I had to do a brief google search to educate myself because I know very little about RLS since I have never had it and can't really relate. Can you exercise with this or does physical activity make it worse?

[[be...]]

@[Ho...] I have no remedies for you, but I want you to know that, I am praying for you to recover and feel better, I am so saddened when I read of so many suffering. But I do believe that there is a time for everything and sometimes things just get better without any medication, and sometimes they get better with it. Hang on to hope...even if it is only a mustard seed right now. Stay Strong. 💖Peace and Healing

[[Ho...]]

Yes, I can exercise all I want! I just can't sit or lay down when it's kicking up, which happens daily. Right now it's rough from about 2:30 in the afternoon until 9:30 at night, but I'm hoping it will lighten up because I think the benzo recovery has made it worse during the day. I never had it in the afternoons or early evening until I went through clonazepam withdrawals. 

People often advise me to exercise until I'm exhausted, not knowing that, no matter how exhausted I am, the RLS won't let me rest. I'm on a treadmill a lot. There were nights when I'd take everything the doctor gave me all at once (that's what I was told to do!) but because I couldn't sit or lay down, I had to walk. Picture me in the dead of night, at 2:30 in the morning, weaving down the sidewalk in the darkness, hoping no neighbors would see me struggle to walk, holding on to fences and staggering from side to side. 

I'm glad you've never had it. See, something to be grateful for! 

[[no...]]

On 30/09/2023 at 03:31, [[H...] said:

feels like worms crawling

 

that’s parentheses/formication  not RLS https://en.m.wikipedia.org/wiki/Formication.   

xxx ❤️ 

[[Ho...]]

55 minutes ago, [[n...] said:

that’s parentheses/formication  not RLS https://en.m.wikipedia.org/wiki/Formication.   

xxx ❤️ 

Hi,

Thanks @[no...], appreciate it! The sensation is not under the skin. It's deeper and could also be described as hundreds of little pulls, or seizures. Moving stops it. 

[[su...]]

On 29/09/2023 at 19:14, [[H...] said:

I could really, really use some help right now. I feel old and used up and desperate for hope.

I just saw this. I'm so sorry you feel this way. I'm with you. 🙏

[[pi...]]

14 minutes ago, [[s...] said:

I just saw this. I'm so sorry you feel this way. I'm with you. 🙏

Hello and welcome to the forum, @[su...]!

Thank you for the kind remarks to @[Ho...]. This process can e very challenging.

I would also invite you to start a thread for yourself, so we can support and encourage you as well.