Severe RLS Where do I go now?

[e365]

Hi! I've been lurking reading your posts for a couple of years. I live in Sweden and am a 58 yo female and have severe burning RLS without PLMD. Here's a condensed version of my story:

July 2011 Laminectomy C4-C5. no real slide effects except nerve pain in right index finger which I've learned to block with my brain. not a real bother

March 2015 Gastric sleeve

April 2019 Sciatica in left leg

May 2019 Suddenly wake up with extreme burning in arms and hands, between thighs. Movement or walking relieves pain. Pain absent when I wake and during daytime.

Local gp (I live in a small village) advises alvedon. doesn't help. dr reluctantly prescribes codeine after a month. that doesn't touch the pain... I don't need to write I didn't sleep a wink.

August 2019 Wake up in extreme pain..so much so that my muscles are cramping..husband takes me to er. Dr there is horrified I haven't been helped. Prescribes oxycontin 5mg at night which helps me fall asleep but doesn't take away the pain completely.

Nov 2019 Referred to neurologist. Takes a lot of blood tests and says my mri shows slight changes in my neck but nothing significant.

I was on oxycontin 5mg for about two years but kept having to increase...eventually got up to 30 mg but then developed extreme itch. ugh

My local gp sees opioids as evil so them we start on a path of alternative meds... I taper off oxycontin in 10 days after 2 years no problem

Etorcoxib- good lord, it's an arthritis med..extreme pain that night

Amitryptallin heart pounding. feel weird

targiniq- I couldn't wake up.. slept most of the day

Gabapentin- while tapering oxycontin. caused suicidal thoughts. scary

Sativex- legal cannibis spray. worked well until it caused severe anxiety..that was fun too (not)

Cannabidiol- cannabis oil..anxiety

Marijuana- amplified my pain

Wellbutrin-didn't help

Low dose naltrexone- no effect

Cymbalta- increased pain had chills

Sifrol- resisted but tried in desperation. afraid of augmentation. didn't help. does Sifrol help with pain or only PLMD?

Imovane (zopiklon) Side effect sleep walking

Acupuncture

Various (lots) supplements

2021 I saw a private neurologist that diagnosed me with RLS. Recommended an iron transfusion as my iron was low. Because this was in another region he couldn't do the transfusion but wrote a letter with recommendations to my gp. GP was dismissive of iron transfusion. I desperately won't to try one as up until this all started my transferritin was low...lowest was 17. My ferritin was 137 last week (I think I read infections can cause an upswing in numbers. I think I have a sinus infection now after covid last month)

2022 Nerve velocity test neg. Celiac test neg but another test shows sensitivity to gluten. I eat gluten free but notice no difference in pain

Currently on pregabalin 300 mg (max dose) at night (25 mg in the morning that I'm tapering off of because of twitching), multivitamin and iron pills. Have valium to take instead of sleeping pils on the worst nights but haven't tried them yet. Pregabalin doesn't take away all of the pain but does help me sleep most nights. Pain is very up and down. Still trouble falling asleep if pain is really bad. Dread going to bed. every. single. night. Dr upped my dosage to take 100mg in the morning but my muscles started twitching. Pregabalin has horrible side effects. some worse than others- hands very swollen in the am. I've developed reynauds since starting it, kills all feelings for having sex (no sex 18 months- luckily, so far, I have a very understanding husband- I don't want this to ruin my marriage), my eyesight feels dim in the am, 9kg weight gain. Also, I have to take it around 8:30 pm to work so it's kind of killing our social life.

My pain is extreme burning at night and I even told the dr at one point early on I can't live with it. It's very up and down in intensity and I never knew something like this existed and would not wish this on anyone.

I've tried avoiding carbs, sugar, caffeine, etc.- no difference. Although those are foods I avoid anyway normally. Ive tried almost everything at least once. All kinds of supplements including magnesium, NAC, ALA....everything. Weirdly the anti-inflammatory diet made my pain worse.

My gp sent me to a therapist for health anxiety Jan 2023 and the therapist indicated the gp thought I was a hypochondriac. After the second session the therapist confirmed this is not in my head. Tears of joy after being almost dismissed by my local gp. I actually loved going to the therapist but my allotted sessions ran out. I just saw my gp last week after he received the final diagnosis from the therapist and for the first time after 4 1/2 years he took the time to examine my thoroughly including an egg (normal). Which didn't make a differance, but....

Since this startedI have extreme pain at night relieved by movement and I'm desperate for pain relief and a good night's sleep. I don't have PLMD. I want to try another med but my dr says we've tried them all. I'm thinking burprenorphine or methadone but am wondering if those will cause itchiness too.

Any recommendations of insights are most welcome. Sorry this post is so long!

Thank you

Oh, one last thing. We had food poisoning last Christmas and I could hardly sip water for a couple of days. I did start on resorb when I could keep something down. Weirdly my pain was very reduced.. I've tried drinking resorb now and I don't notice it helps.

[SueJohnson]

I would ask for a prescription for buprenorphine. The fact that your transferrin saturation percentage was below 20 is a better indicator that your ferritin was low - yes an infection can make it higher. So ask for an iron transfusion again. Print out the relevant section of the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

[e365 in reply to SueJohnson]

Hi Sue, Thanks for the reply. I'd love an iron transfer. The problem is our medical system is sort of like yours in the UK. One region may off er that alternative and another not...My dr says my region wil not do an iron transfer. I actually did bring him a paper from Mayo and our RLS magazine published here in Sweden. He took them but seemed dismissive.

[Joolsg]

Reading your history, I don't think you have RLS.Sudden onset, burning sensation in arms and legs sounds more like paresthesia. It started after your sciatica. Your nervous system seems to have gone into overdrive.

You say that Sifrol didn't help at all.

Sifrol is often used to CONFIRM a diagnosis of RLS. If it doesn't stop the sensations, it's usually not RLS.

One drug that does help nerve pain is Amitriptyline. Amitriptyline worsens RLS for the overwhelming majority.

If it worsens the burning pain, stop it. But if it helps the burning pain after a few weeks, it would confirm you have nerve pain rather than RLS. You say Amitriptyline caused your heart to pound, but did it stop the burning pain?

As most meds don't seem to help at all, have you tried a good chiropractor to release trapped nerves? You could also try vagus nerve stimulation device. It has good reports for nerve pain, neuropathy etc.

I just don't think you have RLS.

Do you sleep well or does the pain wake you and keep you up all night?

[e365 in reply to Joolsg]

Hi Jools, Thank you for your reply. I wonder too if it is RLS. I think the diagnosis is based on that my pain is primarily at night and is relieved by movement of my hands and legs... also, while reading in bed I don't have much pain. It starts when I turn off the light.

I was taking the amitriptyline while on gabapentin. I honestly don't remember how much it helped. I just wanted off of the gabapentin because of the suicidal thoughts.

My neurosurgeon told me to avoid chiropractors because of my laminectomy. I did go to my napropat and he didnt want to touch me....

I mainly sleep well becuase the pregabalin is a donkey dose......but I never wake refreshed.

[Joolsg in reply to e365]

I'm stumped.If pregabalin is allowing you to sleep through, that's half the battle.

Most people with RLS cannot sleep as the RLS wakes them up constantly.

RLS can definitely be painful, but your symptoms seem different.

You just need to find something to stop the burning pain in the day.

[e365 in reply to Joolsg]

Hi Jools, I’m stumped also. But, one thing, I don’t have that much pain during the day.

[e365 in reply to Joolsg]

Joolsg, I have a question about Sifrol. Does it just help with PLMD or does it also help with painful sensations related to rls? I’ve always wondered.

[Joolsg in reply to e365]

It helps with painful sensations as well. So if it didn't help at all, it would indicate that RLS is probably not the correct diagnosis.That's why I think you need further investigations.

Have you tried medical cannabis? It can really help fibromyalgia, neuropathy and nerve pain.

I think your nervous system is misfiring because of the original trapped nerve/sciatica. Medical cannabis might help calm it.

Or a tens machine?

[e365 in reply to Joolsg]

Medical cannabis gave me anxiety. Tens didn't really make a difference

[ChrisColumbus]

I was reading your Post before lunch and was wondering whether your problems were - at least in part - really RLS or something else equally (or more) nasty. I now see that Joolsg has queried this in her Reply to you.

Besides taking Jools' advice, have you read the 'What Is RLS' and the other articles in the Understanding RLS section on the RLS-UK website?

rls-uk.org/

[e365 in reply to ChrisColumbus]

Hi Chris, Thank you. I have read about RLS on the UK, American and Swedish sites. I do have the main symptoms of RLS. Comes at night, relieved by movement or walking. There are some conflicting criteria on different websites. Some say it can be painful. I kind of feel like I could hang a medical degree on my wall at this point. I'm stumped.

[LotteM in reply to e365]

I second Jools' en Chris' query. The key feature of RLS is URGE to move, the other things are less distinctive. Do you have this urge?

[e365 in reply to LotteM]

I don’t think so. I do move to stop the pain though. I’m not sure if that’s called an urge.

[LotteM in reply to e365]

I don't think so. If you had the urge to move, you would know/recognise; it is very distinctive if you have it. E.g. when I had dopaminergic augmentation and the symptoms/urge also appeared in my arms and shoulders, I knew immediately and instinctively.

Your pain sounds terrible, though. Don't give up to get a good diagnosis.

[e365 in reply to LotteM]

Thank you, I have an appointment with a private neurologist next week. 😊

[davchar23 in reply to e365]

Dear e365,

You have been replied to by many of the experienced persons on this forum and so i will only add one comment at this point and that is in connection with the diagnosis of RLS.

In my early days of consultations with specialist neurologists one asked me a very simple question that i always remember before he diagnosed RLS and that was..... when you are lying in bed do you want to remove the bedcovers? I certainly did and still do.

Good luck and keep posting

Davchar

[e365 in reply to davchar23]

No, definitely not!

[SueJohnson in reply to e365]

Do you have an onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting. That is a requirement for RLS.

[e365 in reply to SueJohnson]

Definitely, yes.

[RLSdaily in reply to e365]

I feel for you, often it's worse not knowing what the heck is happening. I have heard all different symptoms people feel from RLS, everyone feels and describes it differently. I don't have pain, more aggravated uncomfortable spastic, as if the inside of my body is claustrophobic. I say if you could imagine how it would feel to be a carbonated liquid ( soda pop) all shook up. That fizzy trapped ready to explode.

[e365 in reply to RLSdaily]

I agree. Not knowing is hard. I’ve described my pain as burning but can also feel like angry hornets in my skin. The pregabalin brings the pain down to painful carbonation. It’s so hard to describe. I’m often lost for words when I see the dr.

[Pippins2]

Has Chronic Regional Pain Syndrome been suggested as that causes very severe burning pain?

[e365 in reply to Pippins2]

Hi Pippins2, Thanks for the reply. No, as far as the doctors are concerened I have RLS......and that's it. My dr sent me to a therapist because I have really questioned the diagnosis. I'm stuck in limbo.

[ChrisColumbus in reply to e365]

Following Pippins' suggestion, I'm not sure that this fits your symptoms - but just in case this might be informative:

crps-uk.org/about/

[e365 in reply to ChrisColumbus]

Thank you, I just looked at the link and do not have many of the symptoms (no swelling, discolouration, skin changes, etc) described. Besides the limbs I do get it across my back and my scalp and face when it's really bad. I thought crps was more limited to a body part.

[HipHop1972]

Hello e36S. Well I’m stunned you poor poor girl, your life, what life you have sounds like pure hell. I’m afraid I can’t give you any advice other than find another doctor as yours sounds like he is back in the dark ages and certainly isn’t up to date medically speaking. But I can give you my support and understanding that you’re not imagining these things. I note that Joolsg and Sue have replied to you, two very experienced members of the forum, not medically trained but great researchers and worth their weight in gold.

So my dear girl, I send my very best wishes for a suitable treatment to be found.

HipHoo1972

[e365 in reply to HipHop1972]

Thank you, HipHop. I really appreciate all of the responses and suggestions from everyone. I have always had it in the back of my head that maybe this isn’t rls. Honestly i flip back and forth. Is it rls or isn’t? I think I’ve been labeled in the medical system here as a hypochondriac and that I won’t except my rls diagnosis. I imagine our system is similar to the NHS and any dr can read my journal. I haven’t given up hope yet. I have an appointment with a private neurologist in Copenhagen (we live near the bridge to Denmark) next week. Fingers crossed I’ll find help there.

[HipHop1972 in reply to e365]

Oh bless you e365, we all support each other in what ever way we can. It’s good you’ve not given up, keep strong, you say you have an understanding husband, that’s so important and there are ways to keep your love and relationship alive without the physical side. Good luck with the appointment with the new consultant and let us know how it went.

Beast wishes HipHop1972

[e365 in reply to HipHop1972]

I’m sure everyone here knows hope waxes and wanes. I’ll definitely update. And hopefully with something positive. Even if it’s changing to a new medication. I also forgot in my very long post the dr ruled out ms and als.

[SueJohnson in reply to e365]

Hopefully you can get an iron infusion there

[e365 in reply to SueJohnson]

I’m going to try!

[Munroist]

The fact that Sifrol, a dopamine agonist, didn’t work suggests it isn’t normal RLS. I recently asked my Doctor to prescribe me some Ropinirole to use occasionally if I stay away from home where it’s difficult to wander about or if take an overnight flight. I took one tablet recently and slept well for two nights so can confirm it normally works. You can get private iron infusions in London without your GP having to agree but it’s a long trip unless you want to combine with some tourism. This place has been recommended and I’m considering it as I am also having trouble getting an infusion.

theironclinic.com/useful-in...

I find it hard to believe there isn’t somewhere private in Sweden that will do this?

[e365 in reply to Munroist]

thank you for the link. I have looked into the UK or Germany but the neurologist I'm seeing next week is in Denmark so hoping I'll be able to get one there.

[TheDoDahMan]

I'd like to register my vote saying that you may not have RLS. Your burning pain isn't very common with RLS, rather it's a sensation that feels like something is "creepy-crawling" under your skin and you MUST move to stop it and walking around (i.e. putting weight on your legs) makes the sensation go away, but when you again lay down to sleep, the sensation soon returns and prevents you from getting to sleep.

As for Sifrol works being a test for RLS, I was first prescribed pramipexole (a similar dopamine agonist), and it didn't work at all to relieve my symptoms, yet I certainly DO have RLS.

In my case, I was also prescribed gabapentin, and when that didn't help, Dr. B put me on low-dose (10mg/day) methadone and BOOM - my symptoms immediately cleared and I got 8 hours of refreshing sleep every day. That was over 4 years ago and it has still been working without ever needing to increase the dosage. Apparently, at such a low daily dose, a build up of tolerance is quite unlikely - another patient told me that he had maintained the same dose over eight years.

Best of luck!

[e365 in reply to TheDoDahMan]

Thank you, I've read it can be burning pain.... I'm open to trying any pain reliever at this point. Methadone or bupronephrine are two I'd like to try...but I don't know if those can be taken while tapering off the pregabalin? There's no way I can go without some sort of pain relief.

[SueJohnson in reply to e365]

Yes they can be taken at the same time.

[JohnThurloe]

I had RLS and narcolepsy for decades. I no longer experience any signs or symptoms of either condition. There was not due to any "Magic Beans" or therapy. It was not what I had to do. It was simply what I had to stop doing. Didn't pay anyone for anything so this was a good deal. The 'path' to normal was relatively easy too. It is simply embarking on a carnivore diet and sticking with it. This business with RLS and narcolepsy is well known in the carnivore community. So is the more complex details of exactly how this comes about. I have been a medical science director for 30 years and so I know medical Latin better than any clinical physician. I am 72 years, have no dignosed medical conditions, take no prescription medication and have dispensed with the need of a doctor. Life is grand.

I know the quackery well too. They profit from you being continually unwell. And there is No Money for any parasite to make off of you if you pursue this path.

[e365 in reply to JohnThurloe]

Thanks, will check into the carnivore diet.

[Dgags]

Hi, First I want to tell you how badly I feel for your RLS struggles detailed in your long history of various medical, therapeutic and drug interventions. One of the realities of RLS that I see constantly is how lonely and individual the struggle is to find something that works. I have organized an rls support group here in Minneapolis. Everyone who participates admits that they feel very lonely, alone, solitary in their efforts to find a solution. There is just no "silver bullet" or answer that works for everyone like there is with some medical conditions. You could check out rls.org, the United States RLS foundation website. I suspect many other countries have something similar. This website in the US has many resources on their webpage. Plus I would recommend looking up the Mayo Clinic Updated Algorithm for treating restless legs. This report gets updated regularly and may suggest some other options for you. I have included the link at the end of this message. Also, I have dealt with very serious rls symptoms since my major lower back surgery in 2001. I also had a laminectomy, four new cadaver dics inserted, and my lower back screwed and bolted together with titanium hardware to slow down the continuing deterioration of my back. CBD and marijuana infused sour gummies work for me, as does 5mg of oxyodone. One note about anxiety and paranoia caused by marijuana and CBD products. For me this only lasts for the first few nights, then lessens. I deal with generalized anxiety all the time so I am very sensitive to anything causing further anxiety. But I have found that after using marijuana for a few nights ( 10 mg of marijuana in small sour gummies that I take about an hour before going to bed ) the worst of the anxiety and paranoia ( what's that sound I hear downstairs, is someone breaking into my house? etc. ) mostly goes away. Since I know what is causing it I can usually just think my way past the anxiety caused by marijuana. I have smoked marijuana when I was younger ( I am 80 now ) I may have less reaction to marijuana than someone who has never taken it in any form. The 5mg of oxycodone works great, except a side effect of oxycodone that some people experience, including me, is that I get itchy all over for about an hour after I consume the oxycodone. So I take it about two hours before bedtime so I can get most of the itching and scratching out of the way before I turn out the lights and hope for sleep. Finally, I hope you can find either a support group or others experiencing RLS so you don't feel so alone. If you already have such a support group, formally or informally around you, I congratulate for taking that important step. I also apologize for this REPLY being so long. Take good care. I wish you well in finding a solution to your RLS. Let me know if you have any questions based on my comments here. Dave

[e365 in reply to Dgags]

thanks, Dave. I used to live in Minneapolis and had my laminectomy at Southview hospital. I had the same itchiness with oxycontin but the problem was 5 mg increased up to 30mg eventually... I was afraid it would just keep increasing dose wise so I called my dr and he agreed with me and started me on the Gabapentin and amitriptyline. Med marijuana is very hard to get here but I managed but I had severe anxiety from it. It lasted for awhile before I figured out . Switched to cannabidiol and it had the same effect. I just seem to be unlucky with side effects.I have checked out mayo's website and the res one too. Lots of great information. Thank you for your reply.

[Merny5]

E365, I would have to agree with joolsg and some of the others. It really doesn’t sound like RLS. Sifrol should have calmed your symptoms.

[e365 in reply to Merny5]

I’m agreeing more and more that maybe it’s not rls.

[rescuema]

Definitely doesn’t sound like RLS. Just in case, look into possible b6 toxicity at least to rule it out. This is occurring more often at less than 10mg from supplements and energy drinks. Get tested for it including testing for homocysteine to ensure your methylation is working properly.

tga.gov.au/news/safety-upda...

[e365 in reply to rescuema]

The dr said they can’t test for b6 toxicity. I did have very high b12 levels. I take bariatric vitamins. Dr told me to stop for 6 months and I did. No difference.

[rescuema in reply to e365]

I don’t know why the Dr would say you can’t test for b6 toxicity as it’s a widely available blood test. High b12 doesn’t cause neuropathic pain but b6 will since the toxicity symptoms emulate deficiency symptoms with broken enzymes functions necessary for critical processes and act as a neurotoxin . Regardless you want to at least test for homocysteine .

[e365 in reply to rescuema]

Because it’s Sweden. And I live in a small village the gp is probably more used to dealing with the more common complaints. Not patients like myself.

[rescuema in reply to e365]

A quick search shows that you can order a B6 test for Sweden through below. I'm sure there are other options you can consider unless you're needing the cost covered through insurance. In the meanwhile please search through the site on the second link to see if you can see some connections to the problems you've experiencing, especially since you're been on bariatric vitamins that tend to contain high levels of B vitamins. The recovery timeline for B6 toxicity can be up to two years.

mindovermetal.co.uk/vitamin...

understandingb6toxicity.com...

[e365 in reply to rescuema]

Thank you so much. I’m going to ask the neurologist about testing on Thursday. If she can’t I will find someone here that can do a blood draw.