THEY THINK ITS RLS/I CANT SLEEP

[Taylor44]

I'm new to the form and this is my very first post. I've been under a lot of stress lately because I have just found out 5 months ago that I have cervical disc issues. I was in a lot of pain until it started to heal and get back to normal. I recently started having numbing tingly itchy and creepy crawly feeling under my legs at night. It is now progressing through my arms. It's been happening for about 2 weeks. I have gabapentin from my cervical issues and I tried 100 mg at night and it does not help at all. I am a pharmacist so I stand most of the day and sit a portion of the day. Compression stockings make me feel worse. I was diagnosed with HSV 10 years ago. I'm noticing a lot of nerve pain isolated and my buttocks and the base of my tailbone. Could the HSV be damaging a nerves and causing this RLS? I've been to 4 doctors and my PCP has no idea what's going on, even after I describe the symptoms at length. I went to the emergency room at Johns Hopkins hospital and they said they think it's RLS. I have a follow-up appointment with a neurologist today. Please give me any advice that you may have on ways to keep this at Bay so that I can get some sleep at night. Thank you guys very much.

[Madlegs1]

Does ibobrufen relieve the pain?

[Hidden]

Hi there,

Sorry to hear about your experience and the uncertainty about it. The diagnosis of RLS is confirmed only by the symptoms. there is no test for it.

If ALL he following criteria are met, then you have RLS

1) an overwhelming urge to move your legs, usually with an uncomfortable sensation, such as itching or tingling

2) your symptoms occur or get worse when you're resting or inactive

3) your symptoms are relieved by moving your legs or rubbing them

4) your symptoms are worse during the evening or at night

5) All other possible causes are eliminated.

Although nerve damage might cause symptoms that mimic RLS, RLS itself is not caused by nerve damage.

Gabapentin, as you probably know is prescribed for RLS, so if it works then it is further evidence that you have RLS. 100mg is a low dose and if it's not relieving the symptoms then it's probably not a high enough dose. For RLS, up to 900mg can be prescribed.

It sounds as if you might need something else for the nerve pain in addition to the Gabapentin, say an NSAID (prescribed not over the counter)

I had fairly severe nerve pain last year, I was prescribed Gabapentin 600mg, Naproxen and Codeine phosphate for breakthrough pain.

I hope this helps

[Taylor44 in reply to Hidden]

Thank you Manerva, The gabapentin makes me so sleepy so I was reluctant to take a higher dose. I spoke to my doctor via email today and he wants to prescribe ropinerol. I also want to have test done to see if this maybe due to herpes simplex virus. I'm having a burning, numb tingly feeling in the soles of my feet and a nagging nerve pain in my buttocks near the Cox bone area. Thank for your input.

[Hidden in reply to Taylor44]

This still sounds like neuropathy rather than RLS. Whilst Gabapentin might make you sleepy at first, you might get used to it after a while. It also works for both RLS and nerve pain.

Ropinirole will not reduce nerve pain. It can be very effective for RLS and in higher doses for Parkinsons disease.

However, a dopamine agonist, (DA), such as Ropinirole, I would say you need to carefully consider. Firstly, one of the criteria for diagnosing RLS is that all other possibilities are eliminated. It doesn't sound as if you have done that yet, so you may risk taking it with no benefit. Secondly, there is a risk of developing an impulsive behaviour disorder with a DA. Thirdly, as I have only recently discovered after taking a DA for about 12 years, is that after some time a DA can paradoxically make RLS worse causing "augmentation" which you can read about on this site. The worst part of which, is for me, is chronic insomnia.

It

Incidentally, when I first started on the DA, it made me very sleepy at first.

I was definitely diagnosed with RLS and if I had known then what I now know about DAs, I wouldn't have started on one.

It might be a good idea to get a definite diagnosis before considering Ropinirole.

[Taylor44 in reply to Hidden]

Thank you Manerva, I will not start the DA. I definitely want to find out what's going on and try my best to treat it no unconventionally and with none of the Parkinson's drugs. It's just very frustrating as I feel like I'm in healthcare laying and not getting the proper treatment. I work in healthcare and I'm having a very hard time navigating the system. Healthcare has changed so much over the last 20 years. We are treated like numbers that they need to hurry up and see and get out. I've seen several doctors over the past couple months and only one seems to have somewhat of good bedside manner. Are you in the US or in Europe?

[Hidden in reply to Taylor44]

I'm not in the US and if brexit goes ahead, I won't be in Europe either. I'm in the UK.

Most of the doctors here are OK. There are many that aren't. They should all be! Here, they are public servants and they are accountable to the government and to their patients.

We also now have Nurse Practitioners and Clinical Nurse Specialists who are generally very good. Pharmacists can also be very helpful.

Not many of any of them, unfortunately are very familiar with RLS.

[Taylor44 in reply to Hidden]

Manerva I am a pharmacist and has practiced over 15 yes. We have very little information on it. Hard to even think straight when it's happening to you. The nurse practitioner is here a pretty decent also. They have to be in order to continue to work under the physicians. Donald Trump is in office now and things are looking pretty crazy here. And I don't know anyone that can afford to leave the country. Too bad I'm not a part of that 1% that owns half the world.

[Marlayna in reply to Taylor44]

Neuropathy goes along with HSV. It’s usually a precursor to the breakout. If you are newly diagnosed with HSV your body still might be acclimating. I get the neuropathy in a wide variety of places ranging from the back of my thighs to the inside of a finger and it’s been a consistent precursor for 35 years.

[Taylor44 in reply to Marlayna]

Thanks Marlayna. I have experienced some nerve pain in the past but nothing like this. I sent a message to my neuro team to see if they can help me decipher what's going on. Maybe I need IV acyclovir instead of oral dosing. I'm not sure and this is very frustrating. Thank you for your help

[Parminter]

Have you been examined for possible spinal stenosis or bone spurs or similar issues?

As you have already been diagnosed with a problem in the spine, the source may be there - particularly as you stand all day.

Google the things I have mentioned, and see if they fit.

I have a spinal problem, and also get the tingles and whatnot in my feet and legs when things go pear-shaped - and it is not quite the same discomfort as RLS.

[Taylor44 in reply to Parminter]

Thank you Parminter, I do have some cervical stenosis and degenerative disc disease from C6-C7 and in most of my cervical spine. I will Google these things to see what I can find. Thank you very much.

[Eryl]

I would guess that your diet is causing the rls and has made you susceptible to getting HSV. First step is to avoid sugar, processed foods and reduce carb intake The minimum required by the body is around 20g, so the 100s of grams which many consume is way too much. youtu.be/KLjgBLwH3Wc(Not working as expected?)

[Taylor44 in reply to Eryl]

Hello Eryl, I eat very healthy. Small portion of carbs. Healthy smoothies, baked foods and plenty of water. I have Celiac so there might be some absorption issues of my foods. I could be lacking in vitamins but I try to eat fruits and vegetables daily. I'm not sure but I will continue to watch what I eat thank you

[Eryl in reply to Taylor44]

If you're celiac, what baked goods do you eat? In my experience Gluten free bread is mostly made with refined starches, which are carbs of the worst kind as they raise blood sugar. Also you need to avoid fruit juices. Fruit is healthy because although it contains fructose, it also contains a lot of fibre so it passes through the small intestine quickly and little of the sugar is absorbed. Instead, it reaches the bowel, where the microbiome breaks it down into safer molecules. Juices contain a large amount of fibre and very little fibre, so the sugar gets absorbed by the small intestine and it raises blood sugar quickly.

[Taylor44 in reply to Eryl]

I don't eat bread or commercial baked goods at all. I bake my own foods and drink water 95% of the time. I make my own smoothies daily with fresh spinach, blueberries, banana and water. I eat for nourishment not for taste.

[Barbee44]

I've suffered with RLS for years and since my spinal surgery it's ten times worse. The only thing that works for me is 1/2 of a .5 Xanax.... now I sleep all night like a baby. The problem is, it's hard to find a doctor who'll prescribe it. My sleep doctor gave it to me but I'm not sure if she'll let me take it forever, or just until after my sleep study. Xanax not only lets you sleep through any RLS, but it also relaxes the nerves so if you have any at all it's very slight.

[craigm1114]

I empathize. Physicians that understand and support RLS are few and far between. I have even had a neurologist that was more interested in her plan than my pain. I am currently back on ropinerole (6mg) at night and 2 mg rotigotine patch. I will be out of the patch soon. I hope to find out more about the heroine overdose drug. I is supposed to help prevent augmentation. I suffered augmentation on ropinerole and pramipexole. For daytime I have used carbadopa levadopa (Sinemet) with good results (no major side effects. Keep trying until. You find out what works for you. Keep up on research because you will probably have to change meds in the future.

Keep on keepin’ On