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Chrissy

Another Progression?

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So I went to a sports doctor about my sprained ankles and he did an ultrasound and found that my right ankle is "trashed",one fiber left in the ligament on the outside of the ankle. The left has all its fibers, but is so stretched out its not much use. He said I could walk on it as long as I wore ankle braces and said my treatment options were surgery, plasma injections into my ligaments, or agressive physical therapy. Getting a second opinion, either way the only treatment he performs is the plasma injections that the insurance doesn't pay for. So that was 3 weeks ago, then came the pain in my calves which I assume is due to the ankle damage. Then last wednesday I "sprained" my wrist doing laundry. It started with pain in the veins on the top of my hand, feeling like my fingers were broken, major tingling in my wrist, and feeling like my forearm will snap. I just alternate bracing it and keeping any additional pressure off it until I see a doctor. Then Monday afternoon I developed muscle pain in both thighs, no real explanation, which quickly progressed into my knees buckling and feeling like my bones will snap. I'm sure they wont but it doesn't make it any easier to walk. The pain is so bad and I just feel like the support isn't there. I have an appointment with an orthopedist July 26th, but I'm nervous about the appointment. They always ask how it was injured and apparently just walking around doesn't sprain an ankle, you have to twist it stepping off a curb or something. And I got major dirty looks when I went to the last appointment with two sprained ankles, this time I'm walking in with two sprained ankles, an injured wrist, and issues in both of my thighs. Talk about not being taken seriously. And what do I do until then? Stay off it? Keep moving so I don't get muscle atrophy? I have a feeling that my wheelchair will soon move from "as needed" to a permanent part of my life. Then you factor in the rapid progression of the movement disorder/seizures (still waiting on the official diagnosis, every doctor is calling it something different) since September 2010. I'm scared they are missing something, but not sure I want to know what. Is it weird that so much is going wrong at once? I've always had rapid progression of symptoms, but not this rapid and not all in one area. Does anyone else have similar symptoms? I did look at the symptoms of EDS and I'm not double jointed or have loose skin. Sometimes my skin is sparkly and/or thin with enlarged veins, but the sports guy said if I had EDS I would have had broken bones or sprains as a kid. And if it was lupus or another connective tissue disorder they would have caught it in blood work by now. My wellness doctor thinks its connective tissue weakness, but his solution is exercise which I was doing until the pain became bad. Any help or input would be greatly appreciative cause the doctors aren't much help right now, they just make my head spin. Thanks

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I'm feeling a lot if weakness and pain in my right wrist.

It feels very weak and I sprained mine just trying to stir up a batch of cookies.

When the injury happened I went and sat on the bed and cried and thought I am just falling apart.

I was very hopeful because it only took about 2-3 days for the pain to subside but now maybe 2 weeks later it's feeling weak again.

I was working on putting together a laptop yesterday and trying to screw in tiny screws was really hurting it.

I notice picking things up hurts.

I am at my moms but I could not handle picking up my husbands heavy coats or handling laundry-I would feel it in that wrist right away.

I've had the muscle pain you described in the thighs and I notice my pelvis bothers me.

It hurts because I've lost weight when I lay in bed and it feels weird to sit.

I feel like I'm just sitting on bones.

I have 2 things to make today and I'm dreading it with this sore wrist.

Actually three-rice pudding, oatmeal cookies, and banana bread.

I'm dreading all that stirring and hope maybe I can get some help.

So what can we do-exercise? Wearing a brace to help support it? Exercise?

I've wondered if mine is aggravated by typing on my iPhone.

The day before I strained mine I had been playing a small nintendo for entertainment and thought well maybe that aggravates things.

Also I notice when I have to peel things to put in my juicer I notice the weakness then also.

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Yeah my wrist hurts when I hold a phone to my ear, hold a cup, open a bottle, stirring stuff, folding, lifting, and pretty much any use. Some days it just hurts all day, sometimes I can't open my hand out of a half fist (that has become the automatic position lately) without major pain in my fingers. And writing, especially signatures is nearly impossible. Plus I find that my signiture is getting more of a long, loopy line than anything readable and even before the "injury" I could sign 4 pages back to back at a doctors office and none of the signatures matched. Weird! It's good to know its not just me. Thanks

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To be properly diagnosed with an HDCT like EDS you have to see a geneticist who really knows what they are talking about. I saw Dr. Francomano in Baltimore who told me there are over 200 HDCTs, of which EDS is only one.

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I did look at the symptoms of EDS and I'm not double jointed or have loose skin. Sometimes my skin is sparkly and/or thin with enlarged veins, but the sports guy said if I had EDS I would have had broken bones or sprains as a kid.

From personal experience, it's not a good idea to try to gauge your own hypermobility and/or stretchy skinned-ness. Pictures of hypermobility tend to be extreme examples, making it easy for someone checking themselves to miss a more subtle presentation. And like Sarah said, a diagnosis of EDS or other HDCT is best sought from a geneticist specializing in those disorders. Other doctors are likely to have notions of EDS that are questionable, outdated or just plain wrong.

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Hi Chrissy

Take a look at these links as I think the spains and ankle ligaments are screaming EDS. I had no broken bones as a child I had a couple of dislocations. I am 37 and got diagnosed with EDS in May 2011, my sister was diagnosed with POTS and EDS in June this year. My sister broke her wrist by falling over whilst on roller skates as a child. Both of us have wide scars as we heal strangely. But we have all the other markers for EDS.

http://www.hypermobility.org/beighton.php

http://www.hypermobility.org/diagnosis.php

http://www.ncbi.nlm.nih.gov/books/NBK1279/

Ehler-Danlos Syndrome

Ignore the fact the first two links say hypermobility as in the UK most Drs who treat this disorder now say hypermobility and EDS hypermobility (formerly EDS3) are the same condition. For EDS hypermobility you don't need the loose skin thats mainly found in classical EDS.

Hope this helps

Rach

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