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I’m writing from Australia about a group of us who are experiencing a variety of spasms and contractions that until now I hadn’t read about belonging to Ehlers-Danlos Syndrome. We are aged from our 30s to our 40s and have spasms and severe contractions that are occurring in our legs (calf muscles), hands (waking to find our fingers restricted in a tight claw), bladder spasms, spasms so tight under our arms that it feels like all the muscles have been pulled into our rib cages never to be released. These spasms are particularly bad at night.
Are there others with EDS experiencing the same? Some in our group are going for investigation for Multiple Sclerosis as the spasms and contractions commenced with pins and needles on one side of the body, although they now affect both sides of the body. It appears this is not something necessarily outside of EDS and we would like to hear from others. We have been taking very high doses of magnesium for long periods of time prior to this commencing and would welcome feedback from others.
Kind regards,
LisaHi Lisa,
I too have hand contractions just affecting the middle to little finger of my right hand at the moment, lasting about 8 minutes from start to finish, usually preceded by stronger pins and needles, then my fingers buzz (this is a fine vibrating from side to side), usually accompanied by fine fasciculations seen in the back of my hand, sometimes in the lower palm, often going up the underside of my lower arm too. The 3 fingers curl up into my palm and I cannot move them. I can still feel them to the touch but, as I said, I cannot use them.They do not hurt at the time, like a cramp would but afterwards my hand pain is worse in those 3 fingers. During these spasms I can still freely move my index finger and thumb. At the same time as these events, I usually have stronger pins and needles in both hands and often both feet as well but no contraction spasms affecting these other 3 limbs. I have observed that the tissue in between the hand bones seems to contract, so the bones are more prominent and also the veins become more prominent.
I have videoed this and (one day!) will get around to putting it on youtube.
Barbara
(UK)Hi Barbara,
Thanks for responding and lovely to hear from you, just sorry to hear that you are also having similar problems to us. Do you also have EDS Hypermobility? Are you also in a similar age range to the girls in our group by any chance? I am actually the girl in our group having the severe spasms in my right hand (like you), which also travels up the underside of my lower arm into the socket of my shoulder and pull into my shoulder joint and then travels down the complete right side of my body. When my spasms are going they affect my thumb and my index finger pulling them into a complete claw. I have very strong pins & needles in both hands and feet, particularly the soles of my feet but no contraction spasms of these other limbs at this point in time although I have been having fast progression of these spasms just over the last 3 weeks. Thanks for your email and if you’d like to stay in touch, my personal email is lisawrightconsulting@gmail.comI also wonder if you’re under a Neurologist and whether you have a terminal tremor in your right hand or otherwise known as an essential tremor as I had this picked up in early October (this is a tremor that is shown by the hand shaking and affects fine motor skills and an inability for the hand to accurately pick things up. I noticed in the lead up to going to the Neuro that I was often spilling food on myself which was very unusual and then found out this was the reason why.)
Cheers
LisaHi Lisa,
I am not hypermobile in general. My knees and probably ankles were as a child but it has caused me no trouble in adulthood. My skin’s not stretchy but I do have a sort of youthful look considering I’m in my 50’s. I’m sorry that you are suffering (and somewhat worse than me, for certain). Does anyone have a clue what the cause of these spasms is ?I’m not under a neurologist at the moment, the last one I travelled 75 miles to see said, “I haven’t looked at your notes but why are you in a wheelchair?” and later on added “I think you’re a nutcase” – So, so much for our NHS, which used to be the envy of the world, this man needed sacking!
I don’t have a tremor, though my fine movements are not as smooth as they used to be. I am okay at picking things up but I drop many many things each day, from pens to cups – I have to make sure I am actually looking at the item (to give my brain more input) in order to keep hold of it.
Barbara
(UK)I’m perimenopausal (still have cycle) and estrogen dominant, HEDS/POTS.
I have the bladder issues, tight ribs, random muscle spasms, adult acne and one sided erect, painful sensitive nipple for no reason. Nights are worse, especially bladder.
Ask your gals if their insomnia is worse or face pimples arrived abruptly (my skin was always clear before) or if they have gained thigh/hip/belly weight for no apparent reason. Those are indicative as well. (I have had thumb essential tremor since my teens.)
How’s your potassium?
CarolineI too have some similar symptoms to this. My right hand forms that claw formation you discussed and it gets worse with activity – particularly my index finger and my pinkie curl toward my palm the most. This happens most of the time as of recently. I had this happen about seven months ago but then the symptom eased up for awhile, but now it has returned. It also happens in my left hand, but not to as great of as a degree. I have what looks like an essential tremor in my hands and have had it for a year, but tests showed it wasn’t. I’ve begun getting episodes where I lose sensation in my feet and sometimes hands which doesn’t get relieved with standing up or moving around. I had a brain MRI last year which didn’t show anything, and I ended up having a spinal tap a month ago which had oligoclonal bands but they were in both my blood and my CSF, so no one has been able to tell me what that means other than some vague guesses. I’ve always wondered about the tremors and my hand being unable to straighten out – it’s been unexplained for awhile and has really made it difficult for me to do some tasks.
I’m sorry it’s taken me until now to reply. Barbara, my first thoughts in reading your comments are that it’s very possible you may be hypermobile as it’s common as a child to have the hypermobility and then to tighten up as an adult (although some of us also continue dislocating/subluxating). I can’t believe you had such a bad experience with the Neuro, but I have also had some terrible comments from Specialists who when I tell them I have EDS, have no idea what it is, let alone what it means. When you mention dropping things, that sounds possibly like a tremor, worth checking out as that was how I felt something was wrong and the first thing I mentioned to my Neuro before my terminal tremor was diagnosed.
Caroline, I wonder if you would consider talking with your Dr about B12 injections? I have been on them for 9weeks and it has solved all night time bladder issues. I have previously been on vesicare for a year to prevent getting up every 15mins to urinate and the B12 has really settled this (but I only went on it for energy increase). B12 has also improved my brain fog. It’s worth a try…
Opuntia, my spasms over Dec/Jan were really bad and I didn’t realise that the medication I was taking I was allergic to, so it was causing some really bad problems (which is why I have taken until now to respond). I’m now on another med that I take just as needed. The spasms still come but have settled so contractures don’t come during the night, just spasms during the day. My right shoulder is now fully dislocated (just waiting on xray to confirm) but can’t put it back in as it’s a very old shoulder!. It’s my dominant side and the side of all my spasms. Have been researching surgery and the info is not good for EDS. I now feel constant spasms from the shoulder down the arm but it’s manageable, in a tight sling which is great. Hope you’re all doing OK as well. Lisa
Deuce – my serum potassium was within normal limits, as was my calcium. I wonder if, like with Magnesium, the serum measures do not reflect what’s going on at cellular level ?
Opuntia – It’s strange you said it comes on with activity because my Spinal Injuries consultant called it ‘muscle fatigue’ but mine can come on just by holding my phone for less than 5 minutes, I wonder if it is linked to energy issues – I have had extreme energy issues for some years now but the protocols I am using now are working, to some degree. It will be interesting to find whether these spasms cease as my energy improves even more.
Lisaw, do you gals all have energy issues ?
Barbara.Hi Barbara, I’m not sure about it being muscle fatigue as mine starts within an hour of being out of bed but I suppose being right handed I am using that arm a lot so that’s enough to set off the spasms for the day. I have noticed since using the sling on the right arm for the last few days, no spasms are occurring.
Regarding fatigue, I have so much of this that I am even using a walker inside my house which was provided to me by a hospital physio. I’m currently on Canadian crutches outside the house but now the walker at home just to take pressure off muscles when going from room to room. Never thought I’d use it, but when he left it with me I tried it and it’s been great. The hospital physio explained that due to our lack of collagen in all parts of our body, our muscles are working so much harder that fatigue is a big battle for us. I find by 10ish in the morning I am shaking constantly when I stand and have been this way for many weeks now. I even use the seat on the walker just when at the kitchen bench so it’s saving on fatigue constantly. The hospital physio is recommending a walker for my car and a slim line walker for inside my home and is organising both for me to try out, so I’m going to give both of them a go.
Mmm . . I think your experience of it starting with 1 hour of rising sort of supports the ‘muscle fatigue’ dx. I read somewhere that ‘working through it’ is bad, so I’m going to take a leaf out of your book (i.e. the arm sling) and totally rest when the contraction happens, after all it’s a symptom of our body in crisis, managing the best it can and crying out for help if you like, so ‘help’ it’s gonna get.
I use a powerchair to get around in, inside and out, otherwise I couldn’t get through even the simplest of days. I do have to keep moving my legs and body though, as keeping still brings it’s own bunch of problems. I used a ‘zimmer’ in the past but didn’t get around much, as it was still draining and I just don’t operate well in an upright position!
Barbara
(UK)
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