Hi all,
I go through phases of having constant muscle twitches all over my body. They are non stop. I’m currently in my first flare up since starting Colchichine 2 and half months ago and the twitches are back with a vengeance. I also have severe neuralgia pains on the right hand side of my face.
Has anyone else experienced this? The Doctors do not seem concerned by the twitching at all but I find it all very strange as to why it is happening.
Thanks
Lucy
Hi Lucy, I had twitches at one stage (followed by extreme tiredness) and the neurologist called them myoclonial jerks. Also, with me the trigeminal nerve became inflamed with Behçet’s disease causing headaches and neuralgia. I would be asking for a referral to a neurologist possible.
Hope that helps, PM me if you like.
Hi, there: mine are pretty severe with my migraines. They are particularly severe when I’m at the end of my Remicade infusions. I also get them more when heat and exhaustion get to me. I know it’s hard, but when doctors don’t seem concerned, i push harder. We have choice here about our doctors, I’m not sure where you live…I hope you get some resolution.
I had this for a spell this year, it was out of control for a couple of weeks. Doctors didn’t seem too concerned either and it has settled down but I still do get it from time to time but yes Ive experienced this, it’s a very strange and worrying sensation. It should pass x
Yes. I have them both. When I am getting a flare my trigeminal nerve can become excruciating. Even the top of my head on that side feels bruised.
The twitching is worse for me when I lie on my back (don't know if that applies to you ).
I had mri done with no neuro cause (although please push for that for you to get checked ). amitryptiline helps my twitching a bit, but all I can do is take painkillers for the facial pain.
Please update us if they find something to help with either and good luck
Hi, I get a lot of muscle twitching in various places, including - most annoyingly - the eyelids. The surefire cure for me is Magnesium Oil. It stops the twitching within a day or two. I used to use Epsom Salts in the bath, but when I moved to a house without a tub I switched to the oil and found it worked even better. It’s not actually an oil, but a saturated solution of magnesium salt. We found it cures my husband’s long lasting attacks of hiccups too!
That's interesting, I started supplementing magnesium a few months ago. Much more energy. Apparently lots of us are deficient in magnesium even if diet is super because it is deficient in the soil.
I have had periods of eye twitching in the past. Not for long on not really even worth mentioning. Never realised it was anything but maybe another Behcets symptom.
I had something very similar. Turns out it was due to a b vitamin deficiency. Colchicine and inflammatory conditions can drain your b vitamins. I currently take 100mg of b6 daily and a sublingual b complex and I felt a difference within ten days.
My muscle twitch that was here for over a year and half went away Bc of the b6. Please give it a try. I’ve never felt better.
Hi Lucy-
I have not had any twitching, but oh my, I know about the nerve pain you are talking about. It's very painful.
Because Behcet’s falls under the category of vasculitis, and our blood flows everywhere in our body there isn't any place that Behcet’s doesn’t affect! I've come to the conclusion that as new, and or strange things happen in my body it's this crazy condition. I know Behcet’s affects every person with different symptoms and severity, but it has changed my life. I spent years dealing with no answers from Dr.'s. They would push it off to stress. Super frustrating! I worked full-time for years, traveled for work, took care of my Mom for many years (what a sweet soul she was), she suffered from Alzheimer's, kept my home running, exercised regularly ...... now I can't do much of that stuff anymore without having flare-up's & setbacks. It's been very discouraging. I retired just before covid hit our world, and I'm still trying to adapt & accept as well as get my head and heart to reconcile that my life is seriously changed from what it once was. My strong faith in God is what holds me together.
Sorry for my lengthy response, but I understand how all the strange things that happen to us is cause for concern.
Blessings to you,
Sara
Wow, thanks so much for all of your replies. Makes me feel a little better that I’m not alone with the muscle twitches as it doesn’t come up as being related to Behcet’s anywhere. I’ve had conformation that I’ve been referred to the Birmigham Centre of Excellence so hopefully they may be able to give me some more answers.
The neuralgia pain has been ongoing for around 20 years. It comes and goes and can be really bad or mild. Stress is definitely a trigger.
Lesleyg - I looked up your myoclonial jerks and strangely I’ve had hiccups everyday since I was 16 and this can also be related to it. Will mention this to my GP so thank you.
Lovingdragonflies - I live in the Midlands in Kenilworth. I had an amazing Rheumatologist but she has now left and they still don’t have a replacement so I’m a little left in the dark. Back to square one!
Hampo81 - the twitches started last October and although they definitely calmed down at one point they’ve not stopped at all. When they are bad, it is constant and worries me. I’m glad yours have settled down.
Leacn - I completely get the bruised feeling, usually around my hairline. I also get like a grit feeling in my eye too. I’ve not noticed it being worse lying down but definitely when im still and relaxed. I’ve tried amitryptaline for something else before and it made me really sleepy. Will definitely keep you updated if I get any answers.
Jaxxi - yes!! My right eye twitches like max sometimes and can last weeks! So frustrating. Thanks for the oil tip, I will definitely try this as weirdly I also have daily hiccups like your husband.
Rooser1 - thanks for this, I would never had known. Did you have a blood test to find out if you were low in B vitamins or just start taking them? I will definitely go and get some further advice on this. Thank you.
Psalm116 - I’m so sorry to hear that you also experience the neuralgia pain, it’s so horrible. I was only diagnosed with Behcet’s in May so it’s been a 20 year battle for me to get a name to my weird and whacky symptoms over the years. But yes, it all makes sense now and how mentally distressing is it when we have no answers. I’m so happy to hear that you have found a reason to hold it all together. This is a great platform for support so please reach out if you ever need anything.
Take care everyone x
I second the b vits. I take a multivitamin (Cytoplan) plus extra methylfolate. Really helps reduce mouth ulcers and fatigue for me. I was on the pill for a hundred years. I didn't realise that it depletes your b vits to.
glad to hear you are going to be seen by the team in Birmingham. They are fab!!
Took me a few months to get in from referral which felt like an absolute lifetime, but answers there and then; support options; meds options. For me to be told there and then that it wasn't in my head and I was right to fight to get answers was a game changer emotionally.
Good luck x
Luby, if you can’t find the oil, a magnesium supplement may also help? Do you ever get muscle cramps? I do, and find magnesium helps with that also.
I go to the Birmingham CoE too!
Thanks Jaxxi, going to go to H&B today to get some advice and check out both options. I used to get muscle cramps quite bad but not had them for a while now. Sorry if this is TMI, but I have had severe diarrhoea for 8 days now and have lost 4-5lbs in a week. Not sure what’s going on but GP advised to get some meds to stop it today so going to pick that up too. At times, it just seems never ending.
Have you visited and been assessed at the Brum CoE yet? If so, how long did it take to be seen from the initial referral?
Hi - just a quick message to say that diarrhoea / digestive issues are a side effect of colchicine. Suggest to raise with your rheumatologist ASAP as you might need to lower the dose or even stop it for a bit. But it could be down to inflammation in the bowel or something else. Don’t ignore it and good luck 🤞
Thanks so much for this. I contacted the Rheumatology department as my rheumy has left, and they have stopped my Colchicine and requested bloods. Thanks so much for the advice.
Hi Lubyluboo, that’s great news, I’m glad you’re getting some help and getting things checked, well done!
I first went to Brum CoE in 2013 - I only had to wait 6 weeks from referral but pretty sure it’s longer now. I have GI issues as part of my Behçet’s but colchicine made them worse - I could not tolerate the full dose of 2 pills a day at first so cut down to half a tab twice a day then upped the dose gradually until I was on half a tab 4 times a day. Spread-out doses worked better for me. But eventually had to stop colchicine after a couple of years as Underlying GI issues got worse. Now on hydroxychloroquine.
I am a little late on the thread but agree with Mrs- Champers about diarrhoea / digestive issues are a side effect of colchicine. I experienced a reaction to colchicine and my GP ignored my symptoms so in the end I contacted my rheumatologist who told me yo immediately stop the medication and get blood tests, the blood tests showed my liver enzymes were way out, in particular my GGT levels and blood count out too, so do not hesitate in getting back to rheumatologist, it took 3 months for my GGT levels to get back to normal and 6 months before rheumatologist would prescribe me a different medication.
Take care and hope you can get this sorted out soon.
Thank you! I have done this now and they have stopped my meds and requested bloods. They are testing my liver too so will see how that comes back. What dosage were you on a day? And what meds are you on now? Thanks for the support, I would have just carried on taking it otherwise.
Hi LubylubooI started off on 0.5mg a day and then increased to 1.0mg and then 1.5mg which was split 1.0mg morning and 0.5mg on the evening. This was back in 2017, I have just looked at my notes and can see it was my neutrophils that were down below normal, liver ALT was very very high as was liver GGT levels, I had blood test very frequently until all these returned to normal, it was the ALT and GGT that took the longest.
They then tried me on Prednisolone which I did not get on with and so then went on Azathioprine which I am still on along with soluble Prednisolone which is used only as a mouthwash and not swallowed.
I still do not think Azathioprine is right for me even though I am still taking it my rheumatologist is not keen on anything I have suggested as an alternative based on others on this forum take, I did lower my dose many months prior to me having my covid vaccination as I had read lots about consultants suggesting people should stop taking immune suppressants if they could, now I am not far from my usual dose but think I will stay at this dose a while as my recent bloods are as always on the very low side for neutrophils, if they drop lower I will get taken off Azathioprine...
Good luck with your tests let us know how you get on.
HiSorry to hear of your issues.
I have muscle twitches, mostly in the legs but nothing as severe as yours.
I found that magnesium helps as others have noted. Worth a try?
Hope you soon get some answers.
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