CAUDAL EPIDURAL INJECTIONS AND RLS

[0rangetulip]

Hi I’m Maggie. I have Cauda Equina Syndrome and had RLS for years. I also have angina. Since being diagnosed with Cauda Equina my RLS has increased severely. I take tramadol and have done for 18yrs but this is now only because I am seriously dependent on it but it no longer works for my pain. I have over the years had serious lumber and cervical problems and currently have multilevel stenosis and disc herniations. After discussions with my Surgeon/Consultant surgery is not a possibility due to age (78) angina and high BP. The associated risks are too great but he has now suggested caudal epidural injection of local anaesthetic and steroid under deep sedation under x-ray control. I have tried pregablin, gabapentin and anti-depressants, the latter causing hallucinations and worsening my RLS. Can anyone advise whether steroids worsen RLS or particular ones to avoid, please.

I have been a member for a few months but never posted before but am so impressed with the community which is so helpful with advice and knowledge - better than most GPs knowledge.

Thanks to you all.

[SueJohnson]

Unfortunately all steroids make RLS worse for most. What was your experience with gabapentin and pregabalin and why did you stop?

[SueJohnson]

Have you had your ferritin checked?

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[wildlegs]

Hi Orangetulip, I’ve had RLS for 25+ years and have taken Tramadol for around 15 years. It still works for me. I’m 78 and not worried about being dependent on tramadol. I take 100 mg a day plus pramipexole 1 mg and so far that combo is working. I know everyone is different and what works for one may not work for others but Tramadol still works for me. Good luck and I hope you find the right combo.

[Nanpat]

Hi, I have been on prednisolone for 40 yrs and it has NOT made my rls worse at all, depends on how high a dose you will be on. A high dose will make you restless but not necessarily in the legs.

Have also suffered with agonising rls for 25yrs until going on Norspan patch recently, relief has been miraculous.

Good luck to you

[Shumbah in reply to Nanpat]

Hi Nan Pat

What dose is you patch ?

Does it slow your bowel down ?

Do you get 7 day coverage ?

I don’t know much about the patches , I am thinking they might be an easy option to obtain for some people who’s doctors will not prescribe sublingual version

Buprenorphine is a terrific medication for RLS , I have been on 2 mg sublingual for over 3 years now

[Nanpat in reply to Shumbah]

Hi Shumbah,

My patch is 10mg, started on 5 but wasn’t strong enough to relieve all symptoms. Only marginally affects bowel but not enough to be a concern. Yes lasts 7 days, if I feel mild symptoms coming on towards end I walk for 5 mins or so and am fine (compared to 5 hrs before)!!! 😥

The big concern for me is I have virtually no appetite at all so am always worried if I’ve eaten enough, used to love my food.

I like the once a week application too.

Do the tablets affect your appetite?

Merry Christmas

[jilk]

there are a few stories you may be interested in,by googling (cauda equina and carnivore diet) I know nothing about the disease just noticed the write ups