Burning in arms and legs in early morning

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lhoff12085
Posts: 49
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Burning in arms and legs in early morning

Postby lhoff12085 » Fri Sep 20, 2019 2:42 pm

I have been through many medications and have been on methadone for 2.5 years. I am now having burning and aching in my upper arms and thighs, starting around 3am. My history is that my medication loses effectiveness after ~2 years. I've already been on ropinirole, then Horizant, now methadone. I had some Horizant left so I started taking it in addition to the methadone, and thought it was effective at first but within a month, the symptoms have gotten worse. The main problem is that sometimes I can't sleep bc of it. The problem occurs whether I exercise or not.

I feel like I'm at the end of the line for medications which is frightening. Does anyone else have these symptoms? I assume they are RLS related bc of when they occur and I have no other health issues.

BTW I have always had leg aching associated w my RLS but it went aways w the meds while they were effective. This is somewhat different but not totally.

Thanks....Laura

stjohnh
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Re: Burning in arms and legs in early morning

Postby stjohnh » Fri Sep 20, 2019 3:50 pm

lhoff12085 wrote:I have been through many medications and have been on methadone for 2.5 years. I am now having burning and aching in my upper arms and thighs, starting around 3am...Laura


Laura, I don't have an answer to the question of the aching, but it does look like, from you old posts, that you have not had IV Iron infusions.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do (ferritin test) to check for low iron only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

lhoff12085
Posts: 49
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Burning in arms and legs in early morning

Postby lhoff12085 » Fri Sep 20, 2019 8:18 pm

Thanks Holland. I will talk to my dr about it. He's a sleep specialist so hopefully he's read about IV iron. I'm pretty discouraged. I appreciate your quick response. Laura

Polar Bear
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Re: Burning in arms and legs in early morning

Postby Polar Bear » Fri Sep 20, 2019 8:33 pm

Ihoff12085 - you mention burning, have you ruled out neuropathy.

I have had burning (neuropathy) to a greater or lesser extent over the past 15 years but during the past year it got to be more severe and persistent. My GP prescribed Pregabalin to support my reduction of Ropinerole and I've had the added benefit it helping my neuropathy.
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

lhoff12085
Posts: 49
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Burning in arms and legs in early morning

Postby lhoff12085 » Fri Sep 20, 2019 8:44 pm

I've only heard of neuropathy related to feet. Thanks for the thought - I will pursue that. Is there a relationship to RLS?

Polar Bear
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Re: Burning in arms and legs in early morning

Postby Polar Bear » Sat Sep 21, 2019 2:17 pm

At first i had umbness burning on the top of my feet, it was random, came and went without any seeming pattern. I could happen on and for several days/a week, mostly at night, and then no signs of it for ages.

Then came a time when it started on my legs, more burning than numbness, sometimes on just a leg below the knee, sometimes a foot and leg.
As I sit here at my desk I can feel it mildly burning on my left lower leg, over the knee and into the lower thigh, and ever so slightly on the top of my right foot and the front of my right lower leg.

I don't know that Peripheral Neuropathy has a relationship to RLS but they do seem to at times accompany each other.

The symptoms of peripheral neuropathy can include tingling, numbness and a weak, heavy feeling in the arms and legs.

I must be honest and say that I have not been officially diagnosed with neuropathy. I have pretty much self diagnosed.
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

lhoff12085
Posts: 49
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Burning in arms and legs in early morning

Postby lhoff12085 » Sat Sep 21, 2019 7:21 pm

Well it's always worthwhile to look into. Thanks for the tip. I see my doctor in November and will talk to him about it.

ViewsAskew
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Re: Burning in arms and legs in early morning

Postby ViewsAskew » Sat Sep 21, 2019 7:47 pm

I first had some neuropathy in my hands when I started pramipexole. It eventually went away. So, can be in hands!

The only things I know about them: neuropathy and RLS both are things that happen as we age, so not unlikely to have both. Also, neuropathy is sometimes misdiagnosed as RLS because both can be so hard to describe and happen in similar areas. But, not other connection I have read about.
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.

lhoff12085
Posts: 49
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Burning in arms and legs in early morning

Postby lhoff12085 » Sat Sep 21, 2019 8:26 pm

I'm taking Horizant again which (just looked) is prescribed for neuropathy. Maybe Lyrica is better or would work better on me anyway. I don't have any numbness or tingling. I've always have "pain", severe achiness the whole time w my RLS but this seems either more severe or slightly different. I have the Clinical Mgmt of RLS handbook and it talks about that as well as neuropathy so I can't be that unusual. On the phone, through the nurse, the doctor said my symptoms aren't typical of RLS so I will take the handbook in w me. He's generally well versed in RLS but may not know it all.

QyX
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Location: Berlin / Germany

Re: Burning in arms and legs in early morning

Postby QyX » Sat Sep 21, 2019 11:16 pm

I had very severe burning sensations in my legs in the first months after my diagnosis. At that time I was taking high potent opioids (Oxycodon) only for a few weeks. I had no experience with those drugs at that time and was not sure how much and at what intervals I should take it.

One morning I woke up with strong RSL symptoms and then suddenly I had some kind of "attack": it felt like somebody was putting gasoline on my legs and put it on fire. It was one of the most extreme pain sensations I ever experienced.

Anyway, what I learned with RLS that any weird of sensation in my legs is possible. Burning sensations are generally very common for me, the aching too.

I know that feeling being "at the end of the line" of medication ... but eh, you still have options:

a) higher dose of Methadone

b) switch to a combination of Morphine, Oxycodone & Hydromorphone (that's what I do, to limit and avoid opioid tolerance issues)

c) use Cannabis (Cannabis boosts the opioids, in combination with opioids Cannabis has incredible powerful effects)

d) try a different antiepileptic than Horizant. Personally I use Oxcarbazepine. It covers some of the symptoms who don't respond to Cannabis and opioids.

I would say in total I achieve between 80% (average) and 95% symptom reduction.

Yes, Lyrica could work better for you but before you try Lyrica I would first investigate how much Horizant can do for you. You normally can increase the dose quite a bit. Lyrica is basically a more potent version of Horizon / Gabapentin ... so when you take Lyrica instead of Horizant, you would simply take a lower dose to reach the same effect. Overall both drugs work in almost the same way.

The kind of symptoms you describe, this is the closest to my symptoms I saw in this forum yet. However it has been years since I had symptoms in my arms.

How much methadone are you taking? My daily opioid dose is about 200 mg morphine equivalent.

lhoff12085
Posts: 49
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Burning in arms and legs in early morning

Postby lhoff12085 » Mon Sep 23, 2019 9:19 pm

Thanks so much! I was wondering if I could take different opioids i.e. if that was something that RLS drs prescribe. If I understand (b) correctly, that's what you're doing? And thanks for the info on Lyrica. I have no experience w that. I just don't want to take anything that creates augmentation. RLS is bad enough w/o that. I'm working on a medical marijuana card - in fact, I have an appt tomorrow to get one. Then I can try that in combination. Had no idea it would work in combination w opioids. Do you mind me asking what state you're in? Do you go to one of the Quality of Care centers? And how much THC do you recommend? Any luck w CBC?

lhoff12085
Posts: 49
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Burning in arms and legs in early morning

Postby lhoff12085 » Mon Sep 23, 2019 10:09 pm

So sorry - I forgot to tell you my dosage. I'm on 5mg methadone in the morning and at night. I take 600mg of Horizant at night (~5). My doctor said he could prescribe a higher level of methadone but that there was a limit. Not sure what that means since he said this when I first went on it. BTW I'm in Florida.

QyX
Posts: 533
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Burning in arms and legs in early morning

Postby QyX » Mon Sep 23, 2019 11:55 pm

Hey,

so I don't live in the United States but in Germany / Berlin. The RLS community in Germany is nonexistent, so I use this forum to get touch in with other patients.

Opioids: yes, correct. I take a combination of Morphine (90 - 120 mg/day), (Hydromorphone: 4 mg/day but I sometimes skip it) and Oxycodon (20 - 40 mg / day). The combination of different opioids is not uncommon but combining 3 different opioids, who are all extended release forms and chemically closely related is a bit unusual.

Unfortunately I have to do this because one opioid alone wouldn't help anymore because I developed a tolerance of the years. I've been taking opioids for 7 years and after 4-5 years they lost some of their analgesic properties. My dose is equal to approx. 200 mg of Morphine. With the new laws and regulations in the U.S. you might find it difficult to find a doctor who is willing to prescribe higher doses daily doses equal to 90 mg of Morphine.

My doctor only does it because I don't have any other options. But you are only on 5 mf Methadone. So there is quite a bit of potential to increase the dose when you tolerate it. You will always lose some effects long term but that won't mean they are not effective anymore.

If you don't tolerate Methadone in higher doses, your doctor most likely will try Oxycodone. It is effective but can cause insomnia, just like Methadone. I found Morphine to be that opioid causing the least insomnia problems.


Cannabis: I would recommend reading what I posted in this forum about Cannabis. I share my complete story, starting with day 1 on CBD only. For the first 30 days I used CBD oil only and then a spray, containing THC and CBD in a 1:1 ratio. And only in the 3rd month my doctor was prescribing classic Marijuana.

When you don't have any experience with Cannabis, I would recommend starting with some varieties who contain 5 to 10% of THC. There are strains in that area who also contain some CBD and almost no CBD at all. I would experiment with those and if they help you, I would move on to stronger stains until you found the most effective product.

Don't be afraid of high potent varieties. When you normally use something that contains 10% THC and now you wanna try something that has 20% THC, just cut the dose in half. And just in general, Cannabis is a lot of trial and error. You will have to experiment and see what helps you and what doesn't.

Some strains help me quite a lot, some don't help me at all. I get the biggest medicinal benefits out of Indica strains (especially a strain called "LA Confidental, I would recommend googleing it) but I also found Sativa strains to be helpful, too.

Horizant: 600 mg is a low dose. When Horizant has been effective and helpful in the past or you don't have any relevant side effects, the normal recommendation would be to try a higher dose and only when this is not working, it would make sense to try Lyrica. But this would also mean that your chances that Lyrica is working are pretty low. Lyrica is best for patients who already get some benefit from Horizant / Gabapentin but the effect is not strong enough and the dosage can't be increased further.


If you want to know what I would do:

I would not want to take Methadone. It looks like Methadone is a bit more effective than other high potent opioids ... however Methadone generally has way more side effects. Morphine, Hydromorphone, Oxycodone, Hydrocodone, Codeine and Dihydrocodeine are all better options. Codeine and Dihydrocodeine might be too weak but the other opioids are great alternative.

Because of the side effect profiles, it would normally make sense to try the more classic opioids first and only go to Methadone if the others don't work (anymore).

You need to evaluate if Horizant is working for you, if it even makes sense to take it or if it is only causing side effect. Should it help with the pain and RLS symptoms in general but cause insomnia, giving Lyrica a try would make sense. If you run into the same options you can

a) just drop antiepileptics in general, maybe Cannabis is potent enough to help you cover the symptoms you can't treat with opioids. You just have to be aware that efficiency of Cannabis will depend on the strain. THC alone is not a good indicator to predict an effect but I am also sure that without significant amount of THC it won't work either. And you will most likely also see that you tolerate some strains well while others might make you feel sad, depressive or anxious.

b) maybe you can get the necessary effect from CBD. Based on my experience it seems like that CBD can replace some of the effects antiepileptics hase. At least I was able to drop the dose of my antiepileptic by about 1/4 and I can imagine that more is possible

c) as I mentioned in my other post, there are quite a few other antiepileptics who are effective for RLS. The best evidence exists for Carbamazepine but Oxcarbazepine should be just as effective, too. I switched from Carbamazepine to Oxcarbazepine because Carbamazepine stopped being effective for me.

Anyway, I hope it is clear that you still have quite a lot of options. I am a real bad case and I can get relief. 5 mg Methadone is not nothing but it is also not that much either. And Cannabis is probably your best option to keep your opioid dose low. I wish I would have had access to Cannabis earlier. This would have made managing my opioid dose so much easier.

lhoff12085
Posts: 49
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Burning in arms and legs in early morning

Postby lhoff12085 » Tue Sep 24, 2019 12:25 am

You’re amazing! I so appreciate all the information. I’m relieved that I have more options than I realized. I’m not sure if the Horizant is working - I still have the burning/aching but it’s not as severe - so I may try doubling the dose to see if that helps I feel a difference. I don’t know much about cannabis so your info is a help. I will see what choices I have in strain. Florida does not have as extensive options as say, Colorado. It’s only been legal medically for a few years. Thankfully, RLS is a valid reason to use it. I will read what you’ve posted about cannabis. Many thanks. I see you stay up late!


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