EXTREMELY uncomfortable muscles- like body wide restless legs syndrome

[Strawberry]

It started last night with my shoulder/back hurting. Made it nearly impossible to fall asleep. Today it is full body muscle aches, and I feel very restless and agitated. Like I just suddenly want to sprint down the street, or do a bunch of gymnastics down the hallway. AS IF I COULD. Oh, and occasionally a little twinge of lower back pain, possibly right kidney or liver. But that part is mild.

I took some baking soda, magnesium, potassium, electrolytes, and microminerals which has helped some, but I am still moderately uncomfortable. I'll take any tips on what else could make this go away!

Also, curious if anyone can guess what may have started this. I had a massage two days ago, but this lady has been doing the same massage on me for 8 years, so that seems unlikely. I've also in the last week decided to re try the whey protein shakes in the morning, and d-ribose at night. I've also just recently started taking unisom at night to attempt to have another sleep aid that I put into rotation. I had used it 3 nights over a week ago with no problems. Last night was the first time that I have taken it since (I've been using my other rotation sleep meds. There is a possibility of too many allergy meds here. I take zyrtec zantac and neuroprotek at night also, but this wasn't an issue before.)

Oh, also its been pretty hot here lately, but I can't understand it magnifying to this extreme just from heat.

Thanks in advance for any advice!

 

[Moof]

I get this too. It's still RLS, but involves far more muscles, and it's usually hideously painful. For me, the only thing that will get rid of it is several minutes under a shower as hot as I can bear it. Afterwards I have to use my muscles as little as possible, blotting myself dry using a bathrobe, and then getting straight into bed. If I'm lucky that's it for the night, but if if I'm unlucky, it's rinse and repeat for the next eight hours!

Magnesium supplements trigger it in me; eating high-carb meals in the evening can also set it off, though it's not as inevitable as magnesium.

As you might not want to try burning hot showers in this weather, I'm hoping other people have some alternative suggestions!

 

[Strawberry]

Ugh hot showers sound awful right now. And not because of the heat. My morning shower may have been what triggered this into full body. Maybe I should soak in the kiddie pool tonight.

 

[zzz]

@Strawberry, what you're describing sounds like akathisia, which is very different from RLS. Benadryl (diphenhydramine) is the easiest way of making akathisia go away, at least temporarily. Benadryl takes about an hour to start working.

From Wikipedia:

Akathisia is a movement disorder characterized by a feeling of inner restlessness and inability to stay still. Usually the legs are most prominently affected. People may fidget, rock back and forth, or pace. Others may just feel uneasy.

I recommend reading more of the article, especially the Signs and symptoms section.

Akathisia is a reaction to certain specific medications, typically neuroleptics (antipsychotics, which may also be used as antidepressants), or virtually any antidepressant. None of the medications you mentioned are known to cause akathisia. Are you taking anything else? (You can PM me, if you want.)

Your electrolyte supplements can be somewhat helpful, as you found; magnesium in particular is known to provide some relief. But Benadryl should get rid of these symptoms completely. Half a tablet will generally take care of mild symptoms; for worse symptoms, more may be needed. If you don't respond at all to a full tablet of Benadryl, you probably don't have akathisia.

@Moof, what you're describing also sounds like it may be akathisia. Sugar can set off an akathisia attack where drugs are the underlying cause; this may explain why high carbohydrate meals sometimes cause problems for you.

 

[Strawberry]

@zzz you are right. I couldn't think of the word this morning, but it could be that. I know about 20 years ago my dr had me try antidepressants and within a week I was going over to my ex husbands house and running on his treadmill. I would run myself to pure exhaustion and still feel like I had to keep going, I'm pretty sure it was akathisia at that time, and this is similar, although I am absolutely incapable of even going for a walk to the end of the block and back. So you don't think the ribose could do that? I definitely will take a benadryl tonight as soon as I get home. Maybe 2. Benadryl is one of my rotation sleep supplements, so one won't work as I was on benadryl over the weekend and the first few days of this week. Besides, sleeping soundly would be nice.

I'll not take the zyrtec so that I don't OD.

Oh, my complete list of daily is milk thistle, dandelion, ALA, vit c, and the rest above. Oh, amlodipine. All of that has been for years.

Got to leave, chat tomorrow, thanks for the advice!

 

[zzz]

So you don't think the ribose could do that?

Ribose is not the primary cause of akathisia cases. However, amlodipine is known to cause akathisia, and it's the only medication that you're taking that has any primary akathisia risk at all. Your symptoms and the side effects of this medication match perfectly. The fact that you've been taking it for years with no problems is not surprising; akathisia often comes on years after the offending drug is started. Assuming that amlodipine is causing akathisia for you, which appears extremely likely to me, the best long term solution is to switch to a different medication. Amlodipine is a calcium channel blocker; some calcium channel blockers can cause akathisia, but many never do. In fact, many calcium channel blockers have been used as experimental treatments for akathisia. (See Calcium channel blockers for antipsychotic-induced tardive dyskinesia.) I'd recommend talking to your doctor about finding a different calcium channel blocker that's suitable for you and that doesn't have akathisia as a possible side effect.

In the mean time, Benadryl should keep your symptoms at bay.

 

[Strawberry]

Here's an update. I took a benadryl when I got home, and eventually my muscles tamed down. Not back to normal, but at least I was fairly comfortable. So at bedtime I took a 2nd benadryl with my melatonin and went to bed. Slept decent.

This morning I felt decent also, but it kicked in while driving to work. So is this from muscle use? I'm crawling the walls.

And on the amlodipine subject @zzz, I've been on it for over 5 years, I would think it would have affected me before now? Unless its a combination of things?

 

[zzz]

And on the amlodipine subject @zzz, I've been on it for over 5 years, I would think it would have affected me before now?

It's actually very common for akathisia not to show up until years after you start taking a medication. Such a delayed onset is called tardive akathisia. From WebMD:

Tardive akathisia may not show up until months or years after you take a medicine.

My sister has tardive akathisia, which started over 20 years after she began taking the offending medications.

Unless its a combination of things?

Akathisia always occurs as reaction to specific drugs, and these are prescription drugs in the vast majority of cases. The main supplements that can cause akathisia are those that increase serotonin, just like the most popular antidepressants. These include supplements such as 5-HTP and SAMe.

Akathisia can also be caused or made worse by withdrawal from certain drugs, most notably opioids and benzodiazepines.

Once akathisia is present, though, certain other substances can trigger episodes or make it worse. Sugar is one of the main dietary triggers of akathisia, and refined carbohydrates affect some people as well. A deficiency in vitamin B6 can also aggravate symptoms. Conversely, supplemental B6 is often used to treat akathisia.

This morning I felt decent also, but it kicked in while driving to work. So is this from muscle use?

No. Akathisia episodes can kick in at random times, and it's often impossible to tie them to a specific cause, other than the underlying drug. It's very possible that it was just the Benadryl wearing off.

One short term remedy is simply to take more Benadryl, as long as you don't exceed the standard limit of two tablets every six hours. Although Benadryl can be extremely sedating, this effect tends to decrease over time. But it still can be problematic, especially in the early stages. For this reason, you may want to try some other simple treatments until you can see your doctor. These include vitamin B6, as I mentioned above, and also NAC. For example, the paper N-acetyl cysteine as a glutathione precursor for schizophrenia--a double-blind, randomized, placebo-controlled trial reports that "N-acetyl cysteine treatment also was associated with an improvement in akathisia (p = .022)." If you Google "NAC akathisia", you'll find quite a few other references.

NAC is also often found somewhat helpful by people for treating their Me/CFS. The time-released form of NAC has been reported to be far more effective for most people than the standard version. One tablet twice daily can be helpful for many people.

There are also several prescription drugs that can be very helpful in treating akathisia; you would need to discuss these with your doctor. The beta blocker propranolol has long been a standard treatment for akathisia, but in recent years, low-dose mirtazapine (Remeron) taken at a dose of 15 mg at night has been found by a number of studies to be the most effective treatment for akathisia. Benzodiazepines can also be very helpful, but are generally used as a secondary, occasional treatment for particularly bad episodes; this is done to avoid the dependency risk of these drugs.

The most important thing is to see your doctor soon, as akathisia often gets worse with time if the underlying cause is not treated. Generally, psychiatrists know the most about treating akathisia, since most cases of akathisia arise from antipsychotic and antidepressant drug use. Even then, knowledge about akathisia varies widely among psychiatrists, and akathisia is often misdiagnosed, typically as "agitation". Among GPs, the variation in knowledge of akathisia is even greater. It's a disorder that doctors will often psychologize, especially since you're a woman. Coming prepared with material that you can easily find on the Web may help. Pointing out that you had similar symptoms when you were on antidepressants should also help, as previous episodes of akathisia are a risk factor for future ones. If these things don't help, and your doctor doesn't provide a good physiological explanation for your symptoms, it's generally most productive to see a different doctor.

Your doctor may also point out that amlodipine doesn't cross the blood-brain barrier easily, and therefore shouldn't cause a CNS problem such as akathisia. However, it is very common in ME/CFS for the blood-brain barrier to be leaky and for many things to therefore get into our brains that normally don't, which is one reason why so many of us are overly sensitive to medications. Due to amlodipine's difficulty in crossing the blood brain barrier, akathisia is not a common side effect of this drug, but it is documented. For example, the article Amlodipine Dystonia Side Effects describes a number of clinical cases where akathisia was a known or suspected side effect of amlodipine.

It is certainly possible that there are other factors in play here, which is one reason you need to see your doctor. In the mean time, I hope I have given you a head start on this with the information I've provided.

 

[Strawberry]

Wow, so much great information! I will see how I do over the weekend, and call him Monday if it continues to be an issue. I will also watch the carb issue. confession here: I do eat potato chips and almonds on my drive to work. Maybe the potato chips is triggering it? I definitely will have to go through all this info again and take notes. I won't give him any articles because he won't read them.....

especially since you're a woman

How did you know???

Thank you so much for the information!

 

[DoggerFisher]

D-ribose made me very jumpy. even a tiny amount. and not in a good way.

 

[Strawberry]

@DoggerFisher Thats nice to know! I haven't dared try it yet, but all except for one night that I had a tiny reaction, I haven't had that gross feeling. I will try D ribose some day, and watch for the jumpy skin crawly sensations. But not in the near future. I'm enjoying not having that feeling.

 

[Gingergrrl]

I will see how I do over the weekend, and call him Monday if it continues to be an issue.

@Strawberry How are you doing now and are you still having akathisia? I had horrible akathisia in 2014 from Valcyte (which is not common but it happened to me and ultimately was not able to tolerate it at any dose). I hope you are feeling better now.

I will try D ribose some day

For what it's worth (which might be nothing LOL), I tried D Ribose in 2014 (for at least six months, maybe longer) and had absolutely no effects from it good or bad.

 

[Judee]

The main supplements that can cause akathisia are those that increase serotonin, just like the most popular antidepressants. These include supplements such as 5-HTP and SAMe.

I was going to say this too. Some of what you are describing sounds similar to Serotonin Syndrome as explained in Julia Ross' book The Mood Cure.

 

[Strawberry]

@Strawberry How are you doing now and are you still having akathisia? I had horrible akathisia in 2014 from Valcyte (which is not common but it happened to me and ultimately was not able to tolerate it at any dose). I hope you are feeling better now.

For what it's worth (which might be nothing LOL), I tried D Ribose in 2014 (for at least six months, maybe longer) and had absolutely no effects from it good or bad.

I'm doing much better, thank you! I was also supposed to try Valcyte, but after no response to Valtrex (except a horrible MCAS reaction when the pharmacy changed brands) we decided against it. I also don't remember d-ribose working for me, but started trying it at night to see if it let me sleep. So I don't think the ribose will work either.

Some day, something will. I do think IVIG will help, but I can't imagine working and getting IVIG!

 

[Strawberry]

I was going to say this too. Some of what you are describing sounds similar to Serotonin Syndrome as explained in Julia Ross' book The Mood Cure.

Oh, that is good information!