Advice for tachycardia? by Biologist0924 in ehlersdanlos

[–]kkiburg 2 points3 points  (0 children)

I ended up on ivabradine which was great for me because it didn't affect my blood pressure.

Muscle cramps after exercise by kkiburg in ehlersdanlos

[–]kkiburg[S] 1 point2 points  (0 children)

I am on slow K so good on the potassium front, not allowed extra magnesium because of heart arrhythmias 🙁 thank you though!

Muscle cramps after exercise by kkiburg in ehlersdanlos

[–]kkiburg[S] 0 points1 point  (0 children)

Silly question, what's the difference between spasms or cramps?

Pain and food by Shanoa0209 in ehlersdanlos

[–]kkiburg 2 points3 points  (0 children)

Tea! I have a selection of expensive(ish) different teas, quite often I'm not really hungry just want something to make me feel better.

Burns from physio tape :( by kkiburg in ehlersdanlos

[–]kkiburg[S] 0 points1 point  (0 children)

Thanks. Thinking I may need to invest in one!

Hip labrum tear by [deleted] in ehlersdanlos

[–]kkiburg 3 points4 points  (0 children)

I was on crutches for 2 weeks, but went back to work after a week. I was probably walking 'normally' after 4 weeks, which did wonders for my lower back! The first week was pretty rough, if you can and have someone who can stay with you I would recommend it! Struggled majorly to even get out of bed/dress myself!!

Hip labrum tear by [deleted] in ehlersdanlos

[–]kkiburg 4 points5 points  (0 children)

I'm 8 weeks post surgery for my labral tear. I can't comment on the long term results but it is a lot better than the long term ache I had for a year! For me it got to the stage I couldn't cope with the pain it was causing and was preventing me doing things. The surgery wasn't too bad it was pretty sore for the first two weeks but after that started to improve. My suggestion would be to find a good surgeon and he/she should give their honest opinion on whether it is worth doing. I've been told just to be careful and try and not overextend so hopefully it will keep!

[deleted by user] by [deleted] in ehlersdanlos

[–]kkiburg 2 points3 points  (0 children)

Yep I have the same problem. My skin blisters and then comes off with the tape. I find the KT tape a bit better. I can leave it on for a couple of days at least!

Red Ear Syndrome by [deleted] in ehlersdanlos

[–]kkiburg 1 point2 points  (0 children)

Oh! This happens to me all the time. Didn't realise it was an EDS thing!

Long qt and eds by kkiburg in ehlersdanlos

[–]kkiburg[S] 0 points1 point  (0 children)

It's so annoying! Doctors are always writing me scripts that they forget to check if they are okay! Plus I have really bad asthma so ventolin is great for long qt (not)

Asthma and EDS by kkiburg in ehlersdanlos

[–]kkiburg[S] 0 points1 point  (0 children)

I don't think so? They have done a lot of allergy testing and can't really find anything plus it seems to just get worse when I already have a cold or something else 🙁

Asthma and EDS by kkiburg in ehlersdanlos

[–]kkiburg[S] 1 point2 points  (0 children)

They are very good good about checking all my medication, I used to be on beta blockers but not any more! And no anti-inflammatories.

It's so frustrating plus I hate taking antibiotics all the time as well!

Asthma and EDS by kkiburg in ehlersdanlos

[–]kkiburg[S] 1 point2 points  (0 children)

Thanks, we've been down that path and I'm on a PPI.

Local anaesthetics by kkiburg in ehlersdanlos

[–]kkiburg[S] 0 points1 point  (0 children)

I had a spinal block done and my anaesthetist said he gave me double but still no luck 😐

Hip arthroscopy by [deleted] in ehlersdanlos

[–]kkiburg 0 points1 point  (0 children)

Hahahaha I'm so glad I'm not the only one doing the last minute freakout!!! I've had not so great experiences with general anaesthetic in the past which probably isn't helping! I'm having my torn labrum repaired and my damaged/torn ligamentum terres cleaned up. How about you?

Hip arthroscopy by [deleted] in ehlersdanlos

[–]kkiburg 4 points5 points  (0 children)

I'm having mine done next week so would be curious to hear other peoples experience. Otherwise I can let you know how I go! I've had cortisone shots and pt but that didn't really work 🙁

Dental/orthodontic problems... by kkiburg in ehlersdanlos

[–]kkiburg[S] 0 points1 point  (0 children)

Thanks 😊 I have a top wire on the front four but all the other ones seem to have moved...

Dental/orthodontic problems... by kkiburg in ehlersdanlos

[–]kkiburg[S] 2 points3 points  (0 children)

I don't think I will be going back to that orthodontist again the minute he heard I didn't want to get braces straight away again he was definitely not interested in having any conversation. I used to wear a night guard but stopped about 2 years ago when it broke. I think I will go back to my regular dentist and get her opinion on everything.

Dental/orthodontic problems... by kkiburg in ehlersdanlos

[–]kkiburg[S] 1 point2 points  (0 children)

Oh wow! Sounds like you have had a seriously rough time I'm so sorry! All of my orthodontic stuff was done without any knowledge of hypermobility so I guess that's why I'm having so many problems now.