View Full Version : Spectacular fall- I feel awful!

08-10-2011, 12:29 PM
Hi Everyone,
I really fell spectacularly last night. My leg muscles have been spasming more and more lately - and getting tighter. My calf muscles feel like they are in a constant hard cramp that never goes away. My PT calls my legs hypertonic. I also keep losing control of my bladder - no fun.

Last night my right leg was spasming and hurting terribly as I walked to the restroom. Jeff had to catch me in the hall. When I was leaving the restroom with my clothes in my hand, my right leg spasmed again and pulled me down suddenly. I fell very hard onto a basket containing bath supplies, ripping a chunk out of my left hip. Jeff picked me up and cleaned and bandaged my wound. I was so very shaky! He put me to bed with an Aleve and then tried to help me stretch out that tight muscle. He could see how tight it was - there were big indentations in my leg. Stretching just made it spasm more, so I curled up to sleep.

I had a terrible time getting out of bed this morning, and I still feel shaky and sore all over. It should be interesting to hear what the PT says this afternoon. I know that I should contact a doc, but it's no use with mine. My PCP thinks I'm a hypochondriac and just sends me to the rheumy. The rheumy is a flake, doesn't want to see me before the six months mark, and refuses to listen to any of my ideas. The neuro that she sent me to claims that there is nothing at all wrong with my muscles and seems to think that I was only looking for drugs.

I'm convinced that my otolaryngologist has it right - he thinks it is Spastic Paraplegia. I've read two articles about the neurological effects of Sjogren's, and both of the researchers mentioned paraplegia and neurogenic bladder as neurological symptoms of SJS.
Boy, do I feel worthless today!

08-10-2011, 01:22 PM
Oh Marla I am so sorry! I know you have to be so very sore! It suck not having a good doctor that listens and knows what they are doing. Try to rest and let us know what the PC says!

08-10-2011, 02:09 PM
Geez Marla! were you so envious of my fall last week that you had to do it too? JK. Take care of yourself and feel better soon!!!

08-10-2011, 03:02 PM

I am sorry that you are in misery. Having a non caring doctor sucks, I used to have one.
Hope you are feeling better.


08-10-2011, 04:00 PM
Oh Marla, I'm sorry you are suffering and especially sorry that you have such jerks for doctors! Does your insurance allow you to go elsewhere for care? Maybe you need a work-up at UCLA or Mayo Clinic or someplace where they give a shoot.

08-10-2011, 08:39 PM
I went to the Physical Therapist and told her that I felt like I had been hit by a truck. She massaged those tight muscles and it did loosen them up a bit.
She understood perfectly when I described how the spasm happens right behind my knee and pulls me to the floor. She said that the muscle coming up from my calf and the quad muscle coming down the back of my thigh overlap behind the knee. It makes sense that when one spasms, it triggers a spasm in the other one, and since the muscles in the front aren't strong enough to counteract it, it pulls me down.
So, here's what I wonder. Why is it that this young lady "gets it" just as soon as I describe it, while all of the docs, with their years of education, just look at me like I'm crazy?

Debbie and Gizmo,
I had a great PCP and an incredible rheumy back in Texas. The docs here on the Monterey Peninsula leave a lot to be desired. I see an otolaryngologist at UCSF, who knows what he's doing - he was recommended by the one I saw in Texas. I've tried to get an appointment with the rheumatology dept. there, but they require a referral from your local rheumy. Mine is a jerk, so that's not going to happen.

One of the few good things about moving back to Texas when Jeff graduates is that I can go back to my great docs. I know that there are some good ones in SF, but I'm not going to be able to see them before we have to move again, so I'll just hang in there until then.

I go in for my bi-weekly massage tomorrow. Noell should have lots of fun working around all of my bruises and wounds tomorrow. I also have a bad burn on my arm from trying to pull a meatloaf out of the oven while talking on the phone with one of my daughters. Once she gets over the shock of how beat-up I look, I'm sure that she'll get me to feeling better.
Hugs to all,

08-11-2011, 05:56 AM
i must remember to never get on your bad side......

if you do this to yourself, ....
what would you do to your enemies.

08-11-2011, 06:13 AM
Oh Marla I'm so sorry. What horrible spasms they must be! Sheesh! I hope you heal fast.

08-11-2011, 07:39 AM
I hope your massage helps!

08-11-2011, 10:40 AM
Oh M, I am so sorry to hear this!

I was awoken in the middle of the night with THE worst muscle cramp in my calf. The calf was still tight and sore this morning. I was thinking of you as I rubbed the calf with Ben Gay-wondering how on earth you deal with the daily tightness in your calves. And then I read your post.....

I am torn between anger and sadness that you haven't found competent doctors to listen and treat you while you are in California. You are suffering in silence because some bullheaded jerks refuse to consider a diagnosis that isn't what the "average" patient experiences.

Don't they get it? You're not average. You're the Divine Ms. M. You require a physician with a higher than average IQ. You and Jeff are no fools. Don't get me wrong. I'm not saying you're asking for too much-just that you want answers not an RX and pushed out the door. Don't wait until you return to Texas, M. Please get in to someone at UCSF if you can.

I forget......did you ask the docs at the Sjogren's Study for so
E suggestions for a rheumy recommendation that accepts your insurance? Are you willing to change your PCP? If so, call today so the change will be effective at the first of the month. Since you like your new PT so much
maybe ask her for suggestions. I bet she'll have some suggestions for a primary who will treat you with respect.

I'm so sorry you took a nasty spill, M. Worse, I'm sorry you don't feel like you can see your doctor for it.

Hugs, my friend.

08-11-2011, 04:12 PM
That is just SO awful -- the spasms, the fall, AND the fact that the docs are jerks. I'm so sorry! I hope the spasms stop and you start to feel better soon!

I'm glad you're moving back to Texas and your good docs! Whereabouts in Texas will you be?

08-11-2011, 04:55 PM
marla i am so sorry you are going through this try to rest my friend some of these doctors need to go back to medical school hope you feel better soon and get the help you need hugs kim l

08-11-2011, 09:40 PM
Hey, BonusMom,
Thanks for the sweet post!
I did call and begged the docs at the Sjogren's clinic for a recommendation. I really wanted to get an appointment at the UCSF rheumatology clinic. They agreed that would be a good idea, but said that I still would need a referral from my current doc. It was a dead end.

My PT has recommended a new young neurologist in town. I might try to get an appointment there.
I'm not walking well at all lately - those spasms are getting worse.

How is your son doing? Does he have any results? And how are you?
Luv & Hugs,

08-11-2011, 09:46 PM
That is just SO awful -- the spasms, the fall, AND the fact that the docs are jerks. I'm so sorry! I hope the spasms stop and you start to feel better soon!

I'm glad you're moving back to Texas and your good docs! Whereabouts in Texas will you be?
Thanks for the post. We own a home in San Antonio. Jeff will go back to work at Lackland when he finishes his PHD. I really dread going back to that big old 5 bedroom house and the heat down there. We plan to get it ready to sell, if the economy ever gets better. After he pays back his time at Lackland, he wants to go teach at West Point or the AF Academy or back here at The Naval Postgraduate School.

When I get back there, we're going to have to have a Texas meet-up. We always seem to have a lot of members from Texas.

08-11-2011, 09:58 PM
Hoping to have some news tomorrow--fingers crossed.

Good news about the young neuro. Even if there's no decent rheumy around, if you could find a good PCP that would make up for the sucky rheumy that you currently have.

It would be FAB if you and Jeff ended up back in Cali for a teaching assignment. The weather is certainly agreeable to SLE/SjS.

I hope tomorrow holds less pain for you. Take care.

08-12-2011, 12:52 PM
I'm sorry to hear that you are having such a hard time Marla. A couple of years back before the MS diagnosis, I was constantly losing control of one of my legs and falling hard. Caught the edge of the counter in the kitchen and split my head open pretty good.

The way these doctors are treating you is just ridiculous. The implication that you were just drug seeking has to be one most over-the-top stupid things I've ever heard.

I hope you get to feeling better soon.


08-12-2011, 10:09 PM
I'm feeling lots better today, but I'm not doing much and I've been using my rollator a lot. That wheelchair in the spare room just might be getting some use this weekend!

08-13-2011, 04:58 AM
Oh Marla - what a week you have had! I am so sorry. Hang in there and know that your WHL family is here to listen when you need to vent.

08-15-2011, 02:33 PM
Marla I'm so sorry you're suffering and having to deal with such a rheumy! How are you?

08-16-2011, 07:18 PM
Good Evening Marla,

I have fallen twice in less than 3 weeks due to spams. One was so horrible I lost all feeling in my toes and feet for nearly 30 minutes. I do not see my new Rhuemy until Sept 2 and have been in the middle of a 2 week long flare. My PCP prescribed Flexeril for me to take. I have also been taking regularly my Topamax which seems to keep some of it at bay. I feel like a prisioner because I am afraid to go anywhere and fall. Luckily all I got out of it was a really ugly bruise on my shin. I hope all works out for you. If you don't already look at taking extra Magnesium. That sometimes helps take some of the edge off. Hope you get a doc who will finally get it sometime soon. Take care and hang in there. :-)


08-18-2011, 10:08 PM
Hi Tanya,
I know what you mean about being afraid to go out for fear of falling. I try to stay active and involved in life, but I creep around using my cane and holding onto walls.
That's why my daughter is training a service dog for me. We hope that with Conner on one side and my cane on the other, I'll walk a little steadier.

I've been taking Magnesium for a long time. My hubby has chemistry & biology degrees and he researched supplements and makes sure that I take a whole list of things that are supposed to help. Whole Foods loves us, with all the money he spends there - LOL!

I have a problem that I can't take most pain medication. I'm highly allergic to all opioids. I can't even eat muffins with poppy seeds - I get a rash and my throat swells shut.
I tend to over-react to most drugs, so I have to be very careful.

I had one of my "regular" falls tonight, right in front of my hubby. We had just folded a load of whites, and I started to follow him out of the room with a couple of folded towels in my arms. I turned wrong, the leg spasmed, and down I sat on the floor. It didn't hurt me, but it scared Jeff - LOL.

Let me know how it goes with the new rheumy. I hope you've found a good one. I would be curious to hear what the doc says about your spasms.
Take care,

08-19-2011, 09:14 AM
I am so sorry about your fall and the problems with your leg muscles i hope that the doctors will listen to you and i hope you recover from your fall. I also have the fear of falling down my stairs there are 16 and i do not have a bathroom downstairs and i am not financilly able to move. Take care of yourself. Bonita

08-19-2011, 02:33 PM
What you're going through is unacceptable! Please, please, please get a new PCP. Since they are the hub of all the specialists and the person that can give you recommendations, it is vital to have a good one. I cannot stress how important it is to find a PCP that listens to you. I went through several before I found one, but boy was she worth it. She fought with the specialists for me. Sadly she moved. She chose her replacement and her staff that knows me well take care of me now. Hope you feel better soon