I'm finally getting an infusion

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
QyX
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Location: Berlin / Germany

Re: I'm finally getting an infusion

Post by QyX »

badnights wrote: Every time I get a little better, it makes me see more clearly how far away from true health I am. Last winter - after the infusion - was sooo much better than now, and yet it was still ranked as severe WED/RLS. This is something many (most?) of us are familiar with, gradually getting used to a bad situation, til we can't even remember what normal is supposed to be anymore. We tell people we're doing well, when we're doing less badly. We have to do that, to survive. But I don't want to forget what normal is, because I want to keep fighting to get it back.
Oh, I do understand this so well! How often I have told my family and friends that I am doing better in situations where I knew very well that the situation had improved but overall was still far away from being a normal person.

It came to this because I was doing so bad that at the first signs of improvement I just wanted to say something positive because some felt so bad about my situation while others have been telling me that my negative outlook is not helping at all. In the end such behaviour on my end caused more trouble than it solved and so I started to cut the people out of my life who couldn't believe how bad my situation really was.

On another note: I am showing some interesting improvements when it comes to depression / anxiety since I am taking iron. In the last days it became increasingly obvious that my mental health is improving significantly however at this point I don't fully understand what is going on yet. Also sleeping pattern is destroyed again, at least for the moment. I will write about it more in the next days once I have a bit better picture of what is going but it became obvious again that I underestimated my health problems when it comes to depression and anxiety related to RLS and my sleeping problems.

Simply sleeping at night doesn't fix anything when you feel tired, have no motivation and just can't get going.

badnights
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Re: I'm finally getting an infusion

Post by badnights »

I am showing some interesting improvements when it comes to depression / anxiety since I am taking iron.
That was one of the improvements I noticed while my infusion was in effect. I was not depressed, I had a very positive outlook. My sleep was refr. I ate less (I needed less calories - that one's obvious, I guess: I was moving less). My sensory abnormalities were less, so that I took less medication for WED/RLS. I forget what the other benefits were, hopefully I wrote them down somewhere.

The depression that I'm struggling with so badly now - is it because the iron is gone, is it lingering effects of the Lyrica that I raised the dose of last fall and quit completely a week or two ago? or is it the effect of being stuck alone all day, working from home, no gym, no interaction with other people during this virus crisis? I can't tell. Maybe all three. The only people I had left in my life were my gym people. I miss it so badly.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: I'm finally getting an infusion

Post by Polar Bear »

Beth, probably a combination of everything. In particular to be alone 24/7 ~ it’s difficult to see positive with that. That’s a lot of time for our own thoughts.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: I'm finally getting an infusion

Post by Rustsmith »

Beth, I share your depression issues but because I have been on methadone for too many months and not because of iron levels. I see a new neurologist on Friday who I am hoping will be my regular neurologist and who reduce the load that I have been placing on my RLS specialist this last few months. Maybe the new doctor will feel comfortable with making a change to my meds so that I can get out of this mental state and get back to living life and doing things once again.

Like you, I have been isolated for the last six weeks except for my wife. Someone delivers our meals to the front door, so the only reason to get out is for pharmacy items and marijuana supplies. Instead of trips to the gym, I really miss playing in the band and visiting with my new friends there. We had to cancel one concert last month and one next month and hope to be able to restart practice again in August, which seems sooo far away right now. And then compound all that with the being caught mid-move so that we only have half of our furniture and other things.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: I'm finally getting an infusion

Post by ViewsAskew »

Golly, I hate that all of us are in such crappy positions. The sleep, the medications, the inherent additional risks for depression - they make it SO hard for us to have ANY idea what is really causing problems. When other stuff comes up - like being isolated - it gets so complex.

Steve, have you seen the videos of the musicians who are all playing together all over the world? They are incredible. Likely expensive to set up. Would you and your friends be able to Zoom a practice, though? I hear you on missing your things.

One of the groups I am part of is scheduling all sorts of silly things - one of us teaching the others to cook, or playing poker online. This weekend we had a "Name That Artist" competition. One of our members who teaches music played and sang songs from a 70 decade span. It was a lot of fun and made me feel like I was with them. While we are part of a volunteer group, we actually post the invites on social media and anyone can join - just because we realize how many people are so isolated.

Wish I had the time and energy - would have been cool to have created a group just for the purpose of keeping people who were isolated and alone in touch with other people.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: I'm finally getting an infusion

Post by badnights »

I am in such a bad state. I can't think. I have symptoms deep into the night, and then waking me in the middle, and then preventing me from sleeping in. I get up and pretend I'm alive for a few hours, then it all starts again.

I haven't been this bad in years, I don't think. It's 400 AM and the madness is still going on in my legs and arms, and I know it won't go away, it's one of those nights. It's not like I can sleep in anymore; the only time I become WED-free is after meds, which should be right now, but tonight it clearly didn't work.

I realized a few days ago, I have real WED/RLS in my arms again, not just a weird feeling, not just a bizarre sense that my wrists didn't exist; I have almost never had real WED/RLS in my arms since I recovered from augmentation ?? or was it since I changed my diet which began a 2-year-long improvement? anyway, in years.

I have no idea what's going on. Life is a bit stressful, but it has been worse. (or am I deluding myself so badly that I can't see how high the stress is?) I think of the usual suspects: no new medications or supplements, diet hasn't changed much, exercise regimen is the same, etc etc. So I think silly things, like: these coconut-oil - nut - date treats I made must be doing it because I added maca and camu powders; or, dust from the construction on the street; or, it's because my leg muscles are sore from working out. All silly things that have happened before without causing WED.

I wondered if maybe this is what I was like before the iron infusion, and I've just forgotten how bad it was. But no, I didn't have this obvious horror in my arms, and I could sleep in! I could sleep at night. I think.

Well, that's part of the problem. I can't think.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX
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Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: I'm finally getting an infusion

Post by QyX »

Do these symptoms you are currently experiencing respond to the Hydromorphone?

You know, Hydromorphone was the first opioid I took long-term for more than 6 months. Initially I started with Oxycodone and then switched Hydro because Oxy was so stimulating for me and causing insomnia. I found Hydromorphone to be the most neutral opioid while Morphine is actually a bit hypnotic but sadly only for a few months.

Anyway, I had to stop Hydromorphone because I developed some kind of Hydro specific tolerance. I then switched to Morphine and after tolerance developed a 2nd time to Oxycodone. After it happened on Oxy I developed a 3-drug rotation scheme.

I am wondering: did you maybe develop a Hydro specific tolerance? Or do you simply need higher doses because of tolerance and your RLS has gotten worse?

Do you have experience with other opioids?

What you are experiencing right now, I had this few times, mostly in the first 2 years after diagnosis. It is ugly and not good and whenever I had this kind of symptoms, I simply took as much opioids as necessary to treat the symptoms.

With symptoms that bad, I think something major is wrong. You are either exposed (for a while) to some kind of substance that is triggering your RLS or your treatment regime became ineffective, maybe partly due to tolerance and partly due to RLS getting worse.

ViewsAskew
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Re: I'm finally getting an infusion

Post by ViewsAskew »

Hugs to you, my friend.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: I'm finally getting an infusion

Post by badnights »

@QyX I don't think it's tolerance at this point because I've been taking hydromorphone for many years. I think you're right that something is triggering it. I don't think it's a natural progression of the disease (whatever that is), because actually it has in general been getting better slowly for years (probably because I changed my diet, but maybe also a long-term recovery from augmentation damage).

The symptoms respond to the hydromorphone if I take enough, but I tend to hold off taking enough. I am scared that I need more than 9 mg per night now, whereas before the infusion (before last Sept) I was mostly taking 9 mg hydromorph contin, and after the infusion all last winter I was at 6 mg. Now I need 12 mg most nights. Well, for the last week anyway. I take it early because when I'm this tired I can't stand the evening symptoms (I can't concentrate to read even standing up, and I'm deathly tired, so there's nothing to DO while I'm being tortured). Then, because I've taken some early, the remaining is not as effective; and if I take that early too, then it doesn't last the night. I wait too long before I break down and take an extra pill; so by the time I take it, it's late, the symptoms are worse, and I have to wait even longer for it to kick in.

It's only been a week that bad, though it feels like months; and tonight feels much better so far. Still not going to make it on 9 mg, I've had an extra 1 mg immediate-release already, and will probably need another one or two (if two, then I should have just taken that darn extra pill).

This seems familiar to me. Maybe the best thing is to accept that I need 12 mg for a while, and just take it early instead of dicking around. I hate to go thru my small stash like that, though.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
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Re: I'm finally getting an infusion

Post by badnights »

@Ann - thanks !
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX
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Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: I'm finally getting an infusion

Post by QyX »

Okay, so in this context, I am pretty optimistic that you will be able to solve those problems and take less Hydromorphone once you have started using some Cannabis. In my experience it is quite remarkable in what ways Cannabis can boost the analgesic properties of opioids.

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