Crohn's flare up and RLS

[pennygates]

I'm having a bad Crohn's flare up right now. All of my medication for RLS has stopped working. Oxycodone , iron, magnesium , non of it is helping. RLS has gone through the roof. Im also trying to reduce pramipexole, but I can't cope with anymore withdrawal right now. I'm past myself. Arthritis also going mad, and fibromyalgia. Everything has been disrupted, by this Crohn's episode. I can't eat, nothing staying in my system. Can anyone suggest anything?

[Hidden]

Penny, the FDA recently approved Rinvoq (an immune modulator) for Crohns. I would run for that. I have a condition called Eosinophillic Esophagitis which makes swallowing difficult and I also have Interstial Cystitis which causes ridiculous urinary frequency. Another immune modulator was recently approved for EoE, but I’ve read it may also help with the IC. I want it more for the IC than the EoE, so I’m taking it as soon as I get insurance approval. Over the past 15 years all the natural things I’ve tried for the IC, and even for other conditions, has not put a dent in the IC.

If you’re really adverse to the idea of an immune-modulator then you can give berberine a try. Google it. Think about it. I would hope and almost expect a really nice improvement in two weeks. If not, then think about discontinuing it and going with Rinvoq. I hope you’re not consuming any sugar alcohols? That will just make your Crohns worse, especially in high doses.

I read that you went to an every other night regimen with the iron. I’m jealous, I have no idea how you were able to make this transition? I must take the iron every night if I want to sleep. If two capsules aren’t working during this flare think about taking three and discuss with doc.

[pennygates in reply to Hidden]

Hi SalemLake, managed to delete my reply somehow. My eyesight is dreadful, have Glaucoma. Do my best to post, but it's hit and miss sometimes. I will start again with iron supplements tonight, going back to nightly dose. Will give berberine a look, as gastro not keen to give me immunosupressants. My Crohns has been stable for some time after a SB resection a couple of years ago, but it is now out of remission . This often recurs two to three years after surgery. This is now my third flare up. It has settled before, so hope it will again. Sorry to hear about your IC, it is difficult to control. I have it too, and am given a daily antibiotic to control infections. Not happy, but little alternative as it always happens after two to three months and needs a higher dose. It does however work. I think RLS is a nightmare on its own, but when there are other conditions to deal with....so I sympathise with you. Thank you for your help. Hope you keep going, as you have much to cope with. All the best.

[eliz45 in reply to Hidden]

Hi. I don't know if this would work for you, but it was a miracle worker for me. I have celiac and microscopic colitis, Sjogren's syndrome and a few other autoimmune diseases. I was housebound and even then had accidents at home, lost much weight and could not gain any weight, terrible nutrition , anemia, dehydration, etc. Diarrhea sometimes 12+ times a day. Anti-diarrheals did not work any more. So when I started getting unbearable leg cramps, I thought it might be RLS. I had read that gaba was the first option prescribed for RLS. Since I could buy it without a prescription I decided to just try a little. It is a powder so little by little I tried it, hoping to not have any bad reaction. The prescribed dosage on the bottle is 1/4 tsp which is 450 mg. ( I take less than that.) After a few days, I noticed that I was no longer running to the bathroom. I looked it up and a possible side effect of gaba is constipation. But for me it has been a godsend. It did not fix my leg cramps but I am now almost completely diarrhea free and have gained over ten pounds. It did not fix my leg cramps, but taking more iron and drinking more water has helped a lot. Since this happened I have read a research article about gaba that suggested it has some influence on the actions of the gut. So maybe you could give it a try. It would not hurt. I wish you the best. I am 78 and was so sick of my life. And I know Crohn's is so difficult for you.

[pennygates in reply to eliz45]

Hi, I'm very pleased to hear that gabapentin has helped you, though it hasn't helped your RLS. I'm surprised that you can buy it without a prescription. As I live in the UK I know it isn't available here without one. I was on gabapentin for some time. The side effects were pretty horrendous for me, and did nothing to help my legs either, so had to come off it. The same with Pregablin. I was doing quite well with iron and opiates until the Crohns flare up. The flare up seems to have been short lived. The sickness and diarrhoea have finally ended, quite abruptly, but have left my RLS in a mess. Now fibromyalgia has flared up too. Everything seems to be disrupted at the moment. I have found, in the past that inflammation in the body does make RL worse. I'm trying through my diet, to settle my digestion down. Very simple food, no processed foods, good protein, all freshly cooked from scratch. I'm the worst cook, so it's a bind, but it's worth it. The dietician at the hospital has advised me. I lost lots of weight, but eat small amounts regularly, to keep my weight up. Sugar is my weakness, so I try to restrict it as much as possible. It makes RL much worse for me. I also take iron and it helps me at night, but not during the day, so I have RL all day. right now. I just hope in the next few weeks my system will calm down after the flare up and some calm will be restored. I also have ME ( more commonly called Chronic Fatigue Syndrome), another autoimmune illness. Once you have one it opens the door for others it seems. It's great that you are suffering less with gabapentin, and that iron is helping your RLS. Iron and magnesium are often depleted with IBD, and IBS. Hope things continue to improve for you. Being restricted to the house is awful, I know. Thank you for your advice, much appreciated. Good luck, Penny

[eliz45 in reply to pennygates]

Hi. What I buy is GABA, which is often talked about in the literature dealing with RLS. It is a neurotransmitter in the central nervous system that controls nervous system "excitability". Gabapentin is a drug that is an "analogue" of GABA. It was manufactured to mimic the effects of GABA. GABA is a natural element and is created in the body. I believe as you get older you don't make as much of it. So GABA is a dietary supplement and gabapentin is the drug made to mimic how GABA works. That is why I can buy GABA. Sorry for the confusion.

I am so sorry for all of your other complicated health issues. This site is so helpful but it also shows how much misery people are dealing with. Have you ever considered going to a functional doctor.? I would love to have someone look at all of my issues as connected. But where I live in the US there is no functional doctor close enough. You seem to be really immersed in very complicated and distressing health issues, and the causes are not known. That has got to be really frustrating. I truly hope your body calms down and you get some relief from this flare and all of your other issues. Good luck on your journey.

[pennygates in reply to eliz45]

Ah, I see see now. Sorry I didn't know, and thought you were talking about gabapentin. Thanks for clarifying that. Although I've never heard of GABA. I will Google it. I've often though I would try Ayurvedic medicine, as a practitioner treats the person holistically, which, I agree, is often lacking in traditional medicine in the West. My daughter tells me I've managed to acquire the 'fringe' conditions, like Chronic Fatigue Syndrome, Restless Leg Syndrome. I don't believe that is random. Any illness title which ends in 'syndrome', usually suggests to me that little is actually known. I often think that doctors think of them as 'in the mind' sometimes, and advise you to distract yourself, and stop thinking about them Just my opinion of course. We hear some tragic stories on this site. Comorbidities make RLS difficult to cope with. RL is the one illness I feel I have little control over, and the hardest of all to manage. Keep well and keep going.

[ChrisColumbus]

I've read that iron and magnesium depletion are common in Crohn's. And some report that treating Crohn's with prednisone/ prednisolone sends their RLS through the roof (not that I know that you're using this to treat your flare up).

Are you also a member of the HU Crohn's forum? I don't know how helpful this might be but mention it just in case:

healthunlocked.com/crohns-c...

[pennygates in reply to ChrisColumbus]

You're right ChrisColumbus, it's time to get some advice from HU Crohn's site. Have had a good run after my small bowel resection a few years ago, but it's now resurfaced. Have asked for appointment with the gastro specialist. Have had prednisone previously and it does exacerbate RLS. Thanks for your reply.

[Eryl]

Foods containing wheat can worsen or even cause Crohn's and can cause rls. Because wheat contains gluten and one of the metabolites created by saliva causes leaky gut which allows particles of food to enter the gut walla nd cause irritation and inflammation. The leaky gut also allows the sugar from the metabolisation of the starch in the wheat to enter the bloodstream quicker which causes inflamation in the nerves which leads to rls.