Opiods

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.
pjmccoy1
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Re: Opiods

Postby pjmccoy1 » Mon Mar 23, 2015 4:59 pm

ViewsAskew wrote:Beth and I have often talked of acceptance. It's very much as if we go through the stages of grief (as in death and dying) when faced with such diseases. We bargain, we fight, we get depressed....ultimately most of us either accept it or we keep repeating the fight against it as if the needle was stuck on the record. I've thought I've accepted it many, many times, only to find out I hadn't. For whatever reason, some of us handle acceptance better than others or get there without trashing about so much.



This is exactly what I told my psychiatrist and very best friend, DNP (Psychiatric Doctorate Nurse Practitioner), "I am grieving the loss of my health." Thank you for your transparency and sharing. She is my prayer partner and is constantly telling me everything is relative and you must stop doing self comparisons. They do you no good and will only exacerbate your depression. Your words and "pressing on" are a source of encouragement. Thank you and blessing to you and yours. Easter is just around the corner. A time of celebration of re-newed life.
PJ, Heaven Bound

ViewsAskew
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Re: Opiods

Postby ViewsAskew » Mon Mar 23, 2015 5:32 pm

Wise advice.

PJ - not sure it would be helpful, but there are some excellent sites for people with chronic and invisible illnesses. One of them is "But You Don't Look Sick." (Link: http://www.butyoudontlooksick.com/) My dearest friend was diagnosed with lupus, Sjogrens, and Raynauds in the year after her mom died and she lost a foster child. (Not literally, but she wanted to adopt and the child changed her mind as she was holding out her parents would get healthy and take her back. She wanted to stay with my friend but only until her parents were better. My friend wanted a daughter - so they parted ways.)

Those were tough years. There happened to coincide with me going from "only" having PLMs to having 24/7 WED because of augmentation and a series of doctors and drugs that make my head spin to think about it. I'm not sure who got whom through what, though her therapist likely was extraordinarily important.

Her therapist is from a practice that focuses ONLY on chronic illness. While they will clearly work with you on other issues, having someone who TOTALLY gets the chronic illness thing is very important. Sounds like you have someone who does, too.

All these things together add up. Eventually you're not fighting as hard, you're not as depressed, you start smiling again. I've realized that in the last year, I've finally felt better than I have in ten years. I've had some times that were better here and there, but it has not been fun in any way, shape or form. I don't feel like I'm over it (as I have other times), but that I'm just in a different place. Hormones, physiology, vitamin D levels, drugs, how I think - whatever is different in a way that is palpable. But, this time, I don't feel like I've beaten it or succeeded in some way. I just am happy to have a respite and am enjoying each moment I get that my life isn't madness. I know there will be times of madness, sadness, pain, sorrow, and all the rest. And, I'm not so afraid of it any more.
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.

QyX
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Location: Berlin / Germany

Re: Opiods

Postby QyX » Wed Mar 25, 2015 1:15 am

But, this time, I don't feel like I've beaten it or succeeded in some way.


Yep, that's it. I have to work/fight so hard to keep my life "plannable".

I life under the constant fear that my situation switches from fragile into catastrophic.

The constant anxiety that comes with that makes me go nuts.

pjmccoy1
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Re: Opiods

Postby pjmccoy1 » Wed Mar 25, 2015 2:25 am

QyX wrote:Yep, that's it. I have to work/fight so hard to keep my life "plannable".

I life under the constant fear that my situation switches from fragile into catastrophic.


I have not yet learned how to live in the present. My anxiety fuels the fear of current fragile state worsening into catastrophic. And that anxiety makes insomnia worse. And insomnia makes depression worse. If I could just get to sleep. But it would seem I need some kind of anti-psychotic to help with relaxing and perhaps lead to sleep, yet as we know that drug class causes some really ugly RLS symptoms, very painful. So then I need something stronger to mask the exacerbated RLS. I wanted my Pdoc to increase my Bupropion from 100sr (which is not even the lowest therapeutic dose) to 150sr but since I am experiencing so many side effects to med's due to my ridiculous Rx sensitivity, Pdoc nor Sleep doc wants to add multiple med's at the same time. Low and slow which is smart so, especially in my case, so we can identify which med may be the offending agent. Anyhow, I went ahead and started the Horizant back again Saturday night and it has helped with the RLS and pain. It's not great coverage, but much better than eating Ibuprofen like candy with minimal help. So both doc's were out last week and my Pdoc replies to my email from last week telling me not to up the Bupropion or start back the Horizant at this time. Literally 10 minutes later my RLS sleep doc (who was also out last week - guess spring break) tells me it's okay to retry the Horizant again. I notified Pdoc I had already started Horizant back again and now I guess I'm in dog house because no response from either party. This really frustrates and disappoints me. But I have to do what I have to do. Like View or someone says, "Take what you need and leave the rest." I'm learning that's the way it must be. And if my Pdoc and RLS doc don't want to work together then I can always get my PCP to Rx whatever I need. Although if I have to go back to an opioid I will need to get that from a Neuro or Sleep doc. Don't think PCP's can Rx in my state certain med's with all the new oversight. And, of course, I'm also on the "bad drug list" because I'm on a benzo, clonazepam, thank you very much to the FNP who decided to start me on it 14 years ago for RLS and anxiety. If I only knew then what I've learned in the last year...
PJ, Heaven Bound

ViewsAskew
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Re: Opiods

Postby ViewsAskew » Wed Mar 25, 2015 6:18 am

I just realized something - it was admitting that it can, at any moment, go from fragile to catestrophic, that (for me) allowed me to let go. It was fighting it all the time that made it so hard. Not admitting that my life was not a normal life.

I also realized, while reading PJ's post, that long ago, when I was working through the first round of childhood crap, I found a way to get rid of the generalized anxiety, the "I can't sleep" type that kept my mind racing. But, I don't know exactly what did it. It happened when I was doing 12-step work and journaling every morning. One day I realized that it didn't take me at least 30 minutes an upwards of an hour to fall to sleep and I never awakened unable to fall back to sleep. I had no idea exactly what it was. But, accepting the "one day at a time" part of the 12 step work was likely a good part of it. I don't think I'd started meditating yet - that was more in the second round :-).
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.

Joanie60
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Re: Opiods

Postby Joanie60 » Wed Mar 25, 2015 10:41 am

I am also a huge fan of the 12-steps and all the related slogans and suggestions (thank God I am not an addict because opiates have saved my life and my sanity) but I have one more suggestion. When I was high school, I took a course in "Silva Mind Control". The book is available via Amazon. It is a self hypnosis kinda thing...don't let the title freak you out too much. But I have used the techniques over many years to help me sleep or just relax.

Who knows? If we all throw out suggestions, one of them might help! In the mean time PJ, you are not alone. Not much help in a practical sense, but hopefully in a emotional/spiritual sense ;-). We are rooting for you to find peace & acceptance, one day at a time.

Joanie

pjmccoy1
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Location: Below the Mason Dixon Line USA

Re: Opiods

Postby pjmccoy1 » Fri Mar 27, 2015 2:11 am

ViewsAskew wrote:I have to take at least 5000 IUs of vitamin D a day to prevent secondary chronic depression, I am affected tremendously by the lack of light in the winter, and almost all the medications we take can make me depressed.


I am also tremendously affected by SAD in the winter. I desperately need the sunlight. I take Vitamin D but suspect not enough. It was low once before and with the Osteoporosis issues I know I need to keep it up to help with calcium absorption which is almost non-existant. I cannot remember if we can take too much D or if it is one of the vitamins that we eliminate what we don't need. I will look into that next week.

On another note, my RLS doc wants me to try this Relaxis pad thing. I'm not sure about it. My RLS seems to bother me worse mid afternoon and ramps up between 5 - 10 p.m. while on sofa relaxed state. If I wasn't so blasted exhausted and without motivation I would move more but I'm just too tired and lethargic. Anyhow, only see possible benefit for bedtime, and again, like Steve previously stated, there is another insomnia issue non RLS related going on with me.
PJ, Heaven Bound

Joanie60
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Re: Opiods

Postby Joanie60 » Fri Mar 27, 2015 12:41 pm

Personally, I am hoping the Relaxis Pad can be used at my desk or on the sofa??? Since I have symptoms around the clock, I'd like to use it when I am sitting alone at desk or sofa, not when my wonderful husband is trying to sleep in our bed!! :-)

2BassetMom
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Re: Opiods

Postby 2BassetMom » Thu Apr 02, 2015 11:15 am

I am new to this syndrome and the medications that are prescribed. My doctor prescribed Pramipexole 0.125 and was augmenting after 1 week. Before I went for my first visit for WED I found that a Hydrocodone 7.5-3.25 worked somewhat and if I didn't get any relief I would take a Cyclobenzaprine 10mg. That would get me at least 4 hrs sleep. I have those meds because I also have a bulging disk that flares up now and then. I have been of Hydrocodone off and on since 2004 when I first started taking it for pain during radiation treatments for thyroid cancer and then in 2008 for pain from Ramsay Hunt Syndrome (shingles in the ear) I have found that in between episodes of pain, I do not feel the need to take the opoid. I forgot to mention that as a result of having 8 weeks of radiation I al left with laryngeal spasms for which I take Tussionex cough syrup which has hydrocodone in it. When I have no need for either of these meds I am not wanting them. So now I'm thinking that I was on the right track in using the hydro in the first place. My doctor didn't think so and that is why I was put on Pramipexole. I saw my doctor Tuesday and explained what was going on and he upped my dose of Pramipexole to .5, 2 hours before bedtime. After reading through the post on this subject and the Prescription Drug topic I am seriously considering going in the opoid direction. There is a doctor who specializes in restless legs about 60 miles away that I may get an appointment with to handle my syndrome. I am so glad I found this forum, it has been very helpful. I was devastated when I started dealing with this as I am dealing with residuals of cancer and the residuals of having shingles in my ear. I learned to deal with those as telling myself it was my "new normal." I will eventually handle this the same way given time. I do agree that the lack of sleep is what makes this syndrome so hard to handle.

2BassetMom
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Re: Opiods

Postby 2BassetMom » Thu Apr 02, 2015 3:39 pm

I just noticed an error in one of my dosages for Pramipexole. I am currently prescribed .25 mg not.5 My doctor prescribed the .5 and has me breaking them in half. Sorry about that, I was up at 3am dealing with a touchy larynx when I posted that..

ViewsAskew
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Re: Opiods

Postby ViewsAskew » Fri Apr 03, 2015 5:56 am

Yes, the new normal. Good way to put it, 2BassetMom.

I hope that the specialist is one who is open to opioids. Given that you augmented in a week (I did, also, such a weird thing it was!), you are likely not a good candidate to take them regularly. I still take them, but only by alternating and after a couple years not taking them. I never take them more then a few days in a row or I'm screwed again.

have you tried any of the gaba drugs? Gababpentin, gabapentin encarbil, or pregabalin? Many docs would want you to try those first.
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.

pjmccoy1
Posts: 80
Joined: Wed Sep 11, 2013 7:00 pm
Location: Below the Mason Dixon Line USA

Re: Opioids

Postby pjmccoy1 » Thu May 07, 2015 10:04 pm

Anyone familiar with low dose naltrexone (LDN) for use in restless legs syndrome treatment? I know it is used for auto immune disorders, as well as, fibromyalgia and some neuropathies.
PJ, Heaven Bound

QyX
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Location: Berlin / Germany

Re: Opioids

Postby QyX » Fri May 08, 2015 9:39 pm

pjmccoy1 wrote:Anyone familiar with low dose naltrexone (LDN) for use in restless legs syndrome treatment? I know it is used for auto immune disorders, as well as, fibromyalgia and some neuropathies.


How shoud Naltrexone help? It is an opioid antagonist, not an agonist like Oxycodone, Codeine, Morphine etc.

It has the opposite effect of opioids can be used to block the effects of opioids and treat an overdose.

pjmccoy1
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Joined: Wed Sep 11, 2013 7:00 pm
Location: Below the Mason Dixon Line USA

Re: Opioids

Postby pjmccoy1 » Sat May 09, 2015 12:53 am

I guess I'm just slow.... It has been discussed as treatment for an auto-immune disorder (which I am now dealing with) so was wondering how it would affect RLS. Thanks for clearing it up for me though.

Another question. Is pain (feels like nerve fibers, not muscular) in thighs a RLS symptom? This is new and seems to be progressing. I think there are some here with fibromyalgia and neuropathy.
PJ, Heaven Bound

QyX
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Location: Berlin / Germany

Re: Opioids

Postby QyX » Sat May 09, 2015 4:28 pm

pjmccoy1 wrote:I guess I'm just slow.... It has been discussed as treatment for an auto-immune disorder (which I am now dealing with) so was wondering how it would affect RLS. Thanks for clearing it up for me though.

Another question. Is pain (feels like nerve fibers, not muscular) in thighs a RLS symptom? This is new and seems to be progressing. I think there are some here with fibromyalgia and neuropathy.


Since my RLS got that severe that I got diagnosed I have all kind of weird symptoms in my legs. Mostly my calves are affected and the most common symptom I suffer from are "muscle cramps". They go away quickly when I start moving around or when I take more opioids. But I also have a lot of other symptoms: I can develop a cold nasty feeling in foot and part of the calves. This happens when I forget to take my next dose of opioids. Sometimes I have the feeling that my calves are cut in two halfes with a fiber.

I would say fibromyalgia and neuropathic pain is complicated to diagnose when you already suffer from RLS.

I walk a lot and go to the gym 4 times per week. Sometimes I can't really tell if it's RLS or if I'm suffering from RLS. If the symptoms don't go away if I walk or don't respond to opioids, then I know it's muscle hangover.


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