Desperate

[Barbee44]

I've had RLS for quite a few years but since my spinal surgery it's 24/7 instead of just at night, I can't sit and watch TV, I can't go to a movie, I can't ride in the car, and I can't enjoy life. I'm about ready to go out of my mind. After my surgery, part of my left leg is numb and I seem to get the worse of RLS in that leg more than the other. If I start doing a crossword puzzle or some other intense brain activity, it stops. But I can't do puzzles all day. Can anyone give me some advice? I'm 75 and am not taking any meds other than blood pressure which I've been taking for years. I don't drink caffeine or take aspirin or NSAIDs because the RLS is 10x worse if I do.

[Whippetmama]

I identify. I have always had rls but since my 3 back surgeries in 2 years it is 24/7 many days. I am 71, btw I use marijuana and tramadol and full spectrum cbd with thc. I live in Mexico and it is legal here for personal consumption.

[Hidden]

I'm really sorry you find yourself in this awful situation. Folks on here will offer you lots of stories about what works for them, from creams to diets, to supplements and devices.

I believe that the best bet for getting relief for your RLS is getting the right medication. I note you say that you currently don't take any.

Getting the right medication will involve two things. One is finding out what's best. The second is getting a doctor to prescribe the medication.

How you go about this depends where you live.

Wherever you live you can get advice from Dr Buckfuhrer at the Southern California RLS Support Group. Follow the link below and you can email by clicking on the yellow button down the left side. Email your situation and ask for advice.

You can also get information from that site, which is

rlshelp.org

Getting a prescription depends very much on where you live. It's a matter of how much choice you have in seeing a doctor, how much the doctor knows about RLS and how willing they are to prescribe what's recommended.

Others in this forum may be able to help you with this.

Just to give you some ideas about medication, none of them are perfect and all have their drawbacks and precautions. You need to find out about these, as doctors don't always tell you.

They include

Gabapentin or pregabalin : these help RLS by reducing nerve sensitivity and are also used for nerve pain so might be appropriate for your situation.

Dopamine agonists : can be effective for RLS but need to be taken with caution.

Opiates can be effective, but in current circumstances it might be difficult to get a prescription. Also need to be taken with caution.

Benzodiazepines which are sedatives and muscle rekaxants. Limited effectiveness for RLS symptoms but can aid sleep.

I hope this helps point you in the right direction. Others in this forum are more knowledgeable than me.

[involuntarydancer]

Your situation sounds awful and you should definitely take action to improve things. There are a number of options available but with RLS it is definitely worth proceeding with caution and informing yourself well and fully before embarking on any of the pharmaceutical options. Many (most) GPs are alarmingly ignorant about the condition and about the impact of some of the treatment drugs - in particular the dopamine agonists (pramipexole/mirapexin, ropinerole/requip and rotigotine/neupro).

The link between RLS and iron is becoming increasingly recognised. For at least 50% of sufferers raising iron levels results in an improvement and for some in a complete alleviation of symptoms. Most RLS experts in the US will now recommend an iv iron transfusion as the first port of treatment. If you cannot access such an expert, you should at least request that your GP test your serum ferritin. Make sure you get the actual figure when you get the results - not just that you are 'normal' or 'within range'. 'Normal' for RLS sufferers is over 100 or even higher and if you are below 100 you should start an iron supplement ('normal' for the general public can be as low as 20).

In addition to raising serum ferritin there are other pharmaceutical treatments. Manerva has set out the mainstream options. It is worth being aware that there is increasing evidence that the alpha 2 delta ligands (pregabalin, gabapentin, horizant etc) do not work so well if they are prescribed after a dopamine agonist (ropinerole/requip, pramipexole/mirapexin, rotigotine/neupro) has been used so it is probably worth trying gabapentin/pregabalin first. Many GPs are not aware of these drugs being used to treat RLS so you may have to enlighten them.

Do read widely on this forum, on rls.org, rlshelp.org and on the johns hopkins university hospital website RLS section. Good luck.

[DicCarlson]

That iron (ferritin) test could be key - it was for me. My level was 49 and supplementation with ferrous bis-glycinate (available as a pill or transdermal patch) raised it to 109 and severe RLS disappeared almost within a week! Do get tested first.

[Lapsedrunner]

In addition to all this great medication advice perhaps you could consider strategies to work on improving any stiffness/ neural tightness that can come as a result of surgery/ scar tissue as I’m sure this can be a factor.

A physical/ physiotherapist (names are different in different countries!) could help with this.

All the best

[Barbee44]

I'm afraid my immune system is too sensitive for those drugs. I tried several and became horribly sick after just one pill. I tried gabapentin and miraplexin and have a bottle of ropinerole--- they make me sick to my stomach and shaky. I have a carload of opiates left from my surgery and I break out in hives from them. I'm seeeing a sleep specialist on the 15th. Now I'm suffering from vertigo besides the RLS. It's so depressing.

[Barbee44]

I'm taking iron pills but I've not noticed any improvement.

[Hidden]

Not everyone taking iron pills will notice any difference.

[Sarasota16]

I had 2 knee replacements a year ago. Prior to that I was taking roprinerole for RLS and clonasapam. They worked well. After surgery I had to add hydrocodone for the pain. 8 weeks later I no longer needed the pain meds, but the ropinerole stopped working. My doctor of 25 years retired, and my new doctor prescribed pramipexole, 1 mg. and 12.5 zolperderm. I slept for 9 hours. However, after a couple of days the sleeping med did not wear off until mid morning. I have researched what dosages I should take, and have reduced the pramipexole to .375 and take trazodone as a sleeping med. it is not perfect, but if I watch my sugar I take I have some good nights.

[Hidden in reply to Sarasota16]

Hi Sarasota, wow! Almost unbelievable ignorance of your "new" doctor, 1mg of Pramipexole is a dose that might be used for Parkinson's disease and way above the Maximum recommended for RLS in the UK. Even the recommended Maximum is probably outdated.

You did well to research for yourself and reduce it.

The zolperdem was also somewhat inappropriate.

Interesting that you now use Trazadone. Antidepressants are usually contraindicated for RLS, being renowned for making it worse.

I read however, that Trazadone is effective in improving deep sleep for people suffering RLS.

I will look further into that.

[Barbee44]

I hope I can tolerate medications. I'll let you know what she puts me on.

[Hidden]

There is some hope in that some medications come in the form of patches. The pills that made you sick might just be upsetting your stomach, hopefully, rather than you being allergic to them.

Hives, however is definitely an allergic reaction. If the opiates you took were again in pill form, it may have been the non-pharmaceutical ingredients of the pills which were the allergen rather than the pure medication. It's a possibility and again there are patches.

Good luck with the sleep specialist, hope you find a solution.

[Barbee44 in reply to Hidden]

The Hydrocodone was spiced with acetaminophen... I'm allergic to that. I also have medical marijuana but the pill has coconut oil in it and I got hives from that. I'm seeing a pain management doc in May. Hopefully, he can help with shots.

[Hidden in reply to Barbee44]

"Shots" sounds like you mean injections. Not a good option if you need daily medication, but still, something to explore.

[cat-a-tonic2]

Sounds like torment Have you told your GP about this? He/she might refer you to a neurologist who can do some conduction tests and who might be able to prescribe some meds to reduce the spasms. Maybe you could even be offered further surgery to relieve the worst of the symptoms, though I would imagine that doctors and surgeons would want to do anything invasive as little as possible. Good luck.