My skin from the knees down is fragile slight scratch that doesnt even bleed can scab over,if you dislodge the scab it bleeds even though it didnt at the time it happened,heels used to crack as they had thick dry skin now you can see every vein.Skin in delicate areas tears easily.Also my thin fingernails take the skin off if you scratch.
Another problem is all my joints are sore ,even the weight of the doona causes my big toesto be sore,fingers sore but no swelling in my joints,cant stand any weight on my knees,my pelvis twists so my knees are pionting north but my top is pionting north east.My navel is half way across my right leg.Both my shoulders are sore,cant lay on them,cant pull my bra down at the back or wash my hair,also have a problem with my eyelids almost covering my eyes,the eyelid seems puffy and too big for my eyes.
Im assuming the pelvis problem stems from the DDD and a pars defect at L5.I had my Chiari decompression and duroplasty on 27th June 2013,
Hoping someone can tell me if they have similar things happening.
I had a post op check at 6 weeks but have not received any more appointments or MRIs ordered,Any suggestions before my next GP visit at the end of the month would be appreciated.
Vicky, Have you looked into EDS? I have it and all my joints hurt- like rheumatoid arthritis but I don’t have RA. The skin issues also sound like possible EDS too. To manage EDS patients are told to live in “mid-range” so no overreaching or overextending, and keep an eye are your vitamin and nutrient levels. A lot of us are low in Vitamin D and supplement with D3, magnesium, and the Bs. Physical therapy can help to build up strength to take some pressure off of joints. I’m sorry you are dealing with these symptoms
Thank you Jenn ,would that also cause big loss of strength in my wrists,used to have really strong wrists ,now having problems opening jars etc,having to run hot water over lids to move them and thats with a silicon gripper.Also holding my arms in one position too long causes my shoulders to ache,even using the keyboard for this becomes a problem,have to have spells when im writing anything.Some of these things seem to have gotten worse since my op almost a yr ago but am wondering if its because of how much panadol extra plus I was taking to relieve the pressure headaches.Would like to be armed with info for my Drs visit,hes blase at times.
jcdemar said:
Vicky, Have you looked into EDS? I have it and all my joints hurt- like rheumatoid arthritis but I don't have RA. The skin issues also sound like possible EDS too. To manage EDS patients are told to live in "mid-range" so no overreaching or overextending, and keep an eye are your vitamin and nutrient levels. A lot of us are low in Vitamin D and supplement with D3, magnesium, and the Bs. Physical therapy can help to build up strength to take some pressure off of joints. I'm sorry you are dealing with these symptoms :(
seen same NS in 1998 for back problem,was just told too far gone to do anything about.2001.I seen a different NS for 2nd opinion,he thought Id probably always had some scoliosis but by then I had hyperlordosis,pars defect at L5 and degen discs at L2/3,3/4,4/5,5/S1.also facet joints and sacro iiliac joints worn.Was diagnosed with Chiari in 2011.op was nearly year ago.Its 5 hr drive to NS.Have never had full MRI ,used to have to travel 3 hrs for them,lovely businessman donated one so now its only an hr away.Think I might take my tablet to next Drs visit and show him this site.You are right my body gets all twisted and the muscles think they are helping and go into spasm,I look a mess,just think the crooked man rhyme,or as my 4yr old grandson says "Grandma your tooked again..Thank you for your help.
Thank you Abby,will try and get Dr to do some blood tests and order a full MRI ,may take my tablet to appointment and show him my post and your replies.Thank you so much for your replies.Ive been pushing myself around in a wheelchair with my feet as it hurts too much to stand in one place and its not very comfortable on arm crutches plus they are restrictive,,my left hip is also high so its pulled my right leg up ,2 months ago my Dr had a student with him and Dr says,we never found a clinical reason for Vicki to use a chair,.It was a pain specialist who advised it as a way to conserve my spineand help with pain control.I really felt like slapping the Dr when he said that.Im sure they have no idea what their patients go through.Why would i want to give up a full time jobI loved,give up driving and lose thousands of $ off my new carlet alone going from being independent to totally dependent.Sorry Ive waffled on so much ,guess Ive been wanting to get that off my chest for a fair while.Goodnight from Australia,actually time has passed me by and its 1:50am,Cheers all. Abby said:
Vicki,
I agree with Beeba and Jenn, this sounds like Ehlers Danlos. Many of us who have Chiari also have EDS. I hope you can get diagnosed and they can instruct you in how to manage.
A manual physical therapist could help with your pelvis pointing north and your top pointing northeast. If that doesn’t work - lie on your back with your knees bent - then drop your knees down until your spine twists in the opposit direction. Hope this help a little bit! Hang in there. Milo cat
