Is it really RLS or a back issue?

[Callahan107]

I have had RLS for 3 years. But, I also have trouble with my back. My RLS is controlled only when I don’t do anything strenuous. Such as carrying laundry, weeding etc. As soon as I aggravate my back my legs throb and jump all night and nothing helps. Neurologist says it’s not from my back but why is it so severe after strenuous activity?

[Hidden]

This sounds awful and very limiting in what you can do.

Although your neurologist says it's nothing to do with your back, your experience seems to suggest otherwise. Neurologists aren't necessarily experts on RLS. RLS is quite low down on their priority list.

If the RLS problem ONLY occurs when you do something strenuous then it would seem that there IS some sort of relationship.

This doesn't necessarily mean however that you don't have RLS, it may be that you DO have RLS but your back exacerbates it.

What exactly is wrong with your back? Have you had any tests e.g. an MRI? Have you been given a diagnosis? What are your symptoms?

Also what medication are you taking for your RLS and what medication do you take for your back, if any?

RLS is due to oversensitivity or excitability of "motor" nerves, i.e. nerves going to muscles. This in part is due to a failure of a dopamine system in the brain to inhibit the motor nerves. However, the excitability could occur in the spinal chord and nerves leaving the spinal. Anything that increases the sensitivity of these nerves will exacerbate RLS.

That's why I ask these specific questions. If the medication you take for RLS is a Dopamine Agonist then it may be that this won't be able to completely deal with this situation.

I have RLS, I also have a back problem. I've never really noted that my RLS is worse when I do something that affects my back, but I take a medication that both relieves the pains associated with my back AND relieves my RLS.

[Callahan107 in reply to Hidden]

I have minimal spinal stenosis and two bulging discs but the ortho said there is nothing bad enough for him to repair. But, I can no longer exercise or even swim without great pain and my back going into spasms that take me to the ER. I take Ropinerole 2mg extended release at bed. I also take Horizant 600 mg extended release. I believe a form of Gabepentin. This works well if taken at 7:00pm. If I take it later or I do anything strenuous during the day I will not fall asleep at all. I have gone 4 days without falling asleep. I also get cramping in my calves and muscle spasms in the arches of my feet. I can not ride or drive a car for more than 30max. My quality of life is horrible and I am only 46 with two teenagers. I have recently had steroid shots in my back and it severely aggravated my RLS. The doctor basically said that has never happened to anyone. It felt like the shots irritated the nerves and my RLS was around the clock for three days before it calmed down. You are right, the neurologist seems to not be very concerned with my RLS. I even tried another and same attitude?

[Hidden in reply to Callahan107]

Your situation sounds awful, I'm sure you must be desperate for a solution.

I too have a bulging disk, so appreciate some of what you're going through. It was at its worse in August last year. It became almost impossible for me to do anything that involved being upright!

I'm sorry the steroid injection made things worse. It does sound as if your RLS is secondary to your back problem. If you relieve the back problem, hopefully the RLS will improve.

I can only tell you what I found helpful, some of which others also refer to.

For my spinal problem I first started on normal release Gabapentin, the extended release version, Horizant, is not available in the UK .

I'm not familiar with dosages for Horizant, but I took 900mg Gabapentin a day, 3 x 300mg. Morning, noon and night. (NOT extended release!). I could have taken more than this.

I also took a strong Non Steroidal Anti Inflammatory as well, Naproxen for two months. I was also prescribed Codeine Phosphate to be taken "as necessary".

I had two sessions with an osteopath, he did something to my spine ( as they do!) and he did some acupuncture.

I also saw a physiotherapist and was shown some exercises to do.

This combination of medication and physical therapies really helped me. Although I still have some chronic nerve pain, it is nowhere near as bad as last August.

Incidentally I was taking 0.75 mg Pramipexole at night for my RLS. However, when the nerve pain settled, I started reducing the Pramipexole.

Both gabapentinoids and opiates (Codeine) relieve pain

[Hidden]

Maybe we are a small minority in the RLS crowd, but I can say that RLS is definitely worse for me after aggravating my lower back by bending over too much, trying to lift too much, etc. Since you've noticed this too, maybe this lower back exercise, the bridge, will help you too, though getting into the floor at 1 or 2 am is annoying, but it has worked for me many times before- youtube.com/watch?v=_leI4qF...(Not working as expected?) Anything is worth a shot, and this one has stopped the jerking when it's back related.

I know from over 20 years' experience there is a definite connection for me. I also got an inversion table years ago that seemed to help some, but recently I was referred to a physical therapist that gave me exercises that have actually gotten the curves out of my lower back, so I don't use it anymore. This guy isn't a standard physical therapy guy, he is a DO and uses a different approach- posturalrestoration.com/ This approach actually works. I've regained an inch in height I'd lost to a messed up lower back. Standard physical therapy didn't do anything to straighten out my back, though that's where I learned that bridge exercise that has helped to relieve RLS in the middle of the night. Between all this and cutting out all the grain-based carbs, I've seen RLS much, much improved.

I hope some of this helps!

[Callahan107 in reply to Hidden]

Thanks for the advice.

[ISO9001]

I have similar RSL problem, it starts after sleeping on a different mattress so I've started "inversion therapy" early days yet but I'm hopeful . Suggest you start of by reading a book by Mia Campbell with that title who talks though the options

[involuntarydancer]

There is a lot of anecdotal evidence that back problems can cause or exacerbate rls. Given the known science behind RLS (that the cause is low brain iron), it is not at all clear why this is so but I think the clue may be in the expression 'the known science'. If there is one thing that emerges from the anecdotal evidence it is that what is known and understood about RLS is vastly exceeded by what is not known about it. That is what makes this forum such a wonderful resource.

[involuntarydancer]

Wow! I've just read your follow up post. Your situation sounds awful. Sadly, it is common to find neurologists with very little appreciation of how debilitating a condition RLS is (regularly described as 'torture' on this forum). It might be worth emailing Dr. Buchfuhrer who is an expert in the treatment of RLS for his thoughts. He is incredibly generous with his time and usually emails back within a day or so. He has his own website - rlshelp.org and you will find his email address there as well as the questions he has received from numerous sufferers from all over the world and his replies. Just reading through the patient queries is quite illuminating. He may have some useful experience with people in your situation.

Have you had your serum ferritin checked? Raising iron levels helps over 50% of sufferers. I would suggest that you do not increase your ropinerole dose.