I have gastroparesis

[mmjxc]

I’m so scared. They admitted me to the hospital and now I have to take something to stimulate my stomach movements. They make RLS worse. The doctor said no opioids because of their affect of the stomach. I don’t know what to do. He’s increasing gabapentin. We have to add something else to make my stomach work correctly. I just want to go home.

[Hidden]

Gosh, I am so sorry to hear this.

This must be a major dilemma for you.

On the positive side, it does now appear that they have got to the bottom of what was causing your inability to eat/drink.

Dealing with this is a priority as you simply couldn't have survived much longer.

Unfortunately the treatment can make RLS worse. It's also true that opiods are out of the question as these also suppress gastrointestinal motility.

IT may be a good idea to increase the gabapentin or it might be better to switch to pregabalin which is more potent.

I also believe that part of the problem with the medicines used for gastroparesis can prevent the absorption of elements necessary for RLS mainly iron, but also vitamin B12.

Your doctor then needs to keep an eye on your serum B12/folate and serum ferritin.

[involuntarydancer]

You poor young thing, I am sure everyone feels for you. I haven't read your previous posts in detail so forgive me if this is counter-indicated but would you consider taking a dopamine agonist temporarily while you get through this? I wouldn't normally suggest a d/a but your options in relation to rls seem to be relatively limited just now ...

[mmjxc in reply to involuntarydancer]

I’m not sure. I’ll talk to my doctor. I have to take prilosec for a month. I’m terrified.

[Hidden]

I agree with involuntarydancer. It's not normally what I'd say but a small dose of a DA might help.

The neupro patch is the least risky.

[mmjxc in reply to Hidden]

I thought about that I’m just so scared of augmentation

I wish this wasn’t happening

[Hidden in reply to mmjxc]

I wish this wasn't happening to you too.

I can understand your anxiety about augmentation, but it's important to keep your RLS under some control. IF necessary, i.e. if an increased dose of gabapentin or pregabalin is not enough a small dose of neupro could help.

Forewarned is forearmed, you know about augmentation and if it should start to happen can avoid it.

[Ranjits in reply to Hidden]

Have anybody had experience of taking kalms and Nytol make RLS worse. I want to try calms for my stress and Anxiety .Please let me know

[Hidden in reply to Ranjits]

Kalms contains Valerian root, which may be OK for RLS.

Nytol, I believe contains a sedating antihistamine and can hence make RLS worse.

[Ranjits]

So sorry But you should be all right if they take care of stomach that might help Rls because your if something wrong with gut that make Rls worse

[mmjxc in reply to Ranjits]

They want me to take antiemetics that are known to worsen RLS, but if it’s what I have to do, it’s what I have to do I guess

[Hidden]

I feel so sorry for you. Remind us how old you are? This is one for the experts including possibly asking dr Buchfhurer who will likely be an expert in other fields as well as RLS.I agree with others about checking bloods for nutrients including iron, B12 & the other things which can affect RLS & I would hope they would agree to give you infusions for anything you need.

I understand your fear. It must be awful & also very rare ( I was a GP ). Ask to be referred to the most expert folk possible

[mmjxc in reply to Hidden]

I’m 20. I emailed Dr. Buchfuhrer and he said I should still be okay to take a low-dose opioid. I hope he’s right. I’ll get tests done again, but they tested me when I was in the hospital. All I know is my potassium was 2.7 and I was close to having a heart attack. I was passing out as I walked into the ER. I wouldn’t doubt that my vitamins are low though, and the hospital I was in wasn’t that great either.

[Hidden in reply to mmjxc]

It sounds horrible. I hope everyone will do all they possibly can to fix it for you. I can’t imagine having severe RLS at age 20 & another horrible condition as well seems so unfair. Have you got other family who will fight to get you the best treatment as well. It can be hard when you are ill to have the strength to get your message over.

[Esme2007]

Hi

I’m so sorry you are in this situation but on a positive note at least now they know what has been causing you being so terribly poorly . I too have problems with my tummy and have had for years . I’m awaiting big abdominal surgery and will have to travel up to Manchester for this . I live in the West Midlands . I take Pregabalin and at the moment am finding relief with it as it is letting me sleep and prevents the RLS . I worry that when I have my surgery the pregabalin may not work as I may have to be fed through intravenously for a few months and my stay in hospital will be quite long .

I know that feeling of being in hospital away from home and waiting for the doctors to do their rounds each morning and being told they are going to try different medications treatments etc . It’s very scary I know . I too like you just want to go home when I’m in hospital.

Try and stay positive- I know it’s hard . Remember that what they are doing is to make you better. You couldn’t have carried on the way you were . It’s a positive thing that you are in hospital - it won’t be forever . I can’t offer advise with regards to the medications etc but I have experienced really bad augmentation myself and yes it’s frightening . If it happens you will get through it .

Remember this forum is here for you . We will all listen to what you have to say and reply and get you through this . You are not alone . Sending you a hug 🤗

[mmjxc in reply to Esme2007]

I’m so sorry you’re dealing with that. Hospital stays and surgeries are so scary. Having RLS at the same time is worse. Hopefully the pregabalin keeps working for you even after surgery. Hugs to you too. <3

[debleecan]

I’m so sorry. I hope you are doing ok. Norco, 300mg Gabapentin, and small doses of ropinirole practically eliminates my RLS (and pain) but then I have to live with the side effects of those. To eliminate Norco altogether would be disastrous for me. I’m sending calm and peaceful prayers your way.