I walk like I am 90 years old...

[comfortzone]

I don't know what happened but I had knee replacements -- one a year ago...the other about 8 months ago and I am not well yet. In fact today was a bad day where I was teetering or tottering on my legs and shuffled along very very stiff...... This seems to be very unusual to have such stiffness with no known cause. I am 52 y.o. and also have hip replacements bilaterally.

I never give up though. I pushed myself with errands in stores -- pushed a cart around most of the day. My physical trainer would not even let me work out with him today --- how pathetic. Yet another step backward....it's been one step forward -- 17 backward from the get go.

I am more crippled up than I was pre-knee surgeries......now my future seems very dim....I can't work 12 hour shifts on my feet as a nurse any longer and I just live doc appt. to doc appt. What a crazy thing to have happen in the middle of life.

So far I've seen rheumatology, 3 ortho surgeons, pain management, my primary care, podiatry and on Monday will be neurology.

My big fear is the neurologist will find nothing wrong that he can treat or handle or find period. I want a reason for my leg weakness and stiffness and pain. I want a reason for my toes burning and tingling and going numb every night keeping me awake. I'd like a reason why my right arm and elbow in particular are stiff and painful and weaker than it ever was. And the left arm tingles mostly at night from fingertip to shoulder. I can't even use a cane to aid me on bad walking days cuz my arm hurts too bad.

The knee surgeon says it's not his fault, the primary doc is clueless, the arm ortho thought it was my neck, the spine ortho says no it's not. The rheumatologist finds Ehler-Danlos type 3 ... for the reason for severe osteoarthritis with 4 joint replacements by age 51.....too "bendy" for my own good I guess.

In the meantime I don't even know how to act or what to do. I work on keeping somewhat active although activity usually worsens symptoms. I take my Tramadol, Voltaren Cream, and Neurontin as directed....and nothing ever changes. Is this it? Just a bad outcome? I want to know why! My flexion and extension are perfect --- and everyone says, "well you look fantastic!" Great....thanks and so do you....as I audibly pant or moan from chronic pain.

EMG IF the Neuro thinks it's needed on Monday -- lower and upper extremities. ALL my docs think it's needed. They are grasping at straws and no one knows what the heck is wrong with me.....least of all me. A whole year of this --- and I have to play my own doc by seeking out specialists ... sometimes utilizing the referrals suggested.....

That's all. Just bummed out tonight and confused and staring at that final possible, "you're fine, nothing's wrong" ... by neurology. I don't know what I'll do if I get that for an answer again. They know I'm not fine......just no answers...

Please if you have any ideas or suggestions or type of doctors or anything I would love to hear what they are....& if not --- it felt good to just get this yuck out of me and onto the keyboard.

I'm ging to focus on a project....making desserts for an event here in town. Tiramisu, meyer lemon bars, chocolate walnut tart with toffee chocolate drizzle, cheesecake with berries, and chocolate dipped strawberries. I can sit here at the computer --- do a little work --- sit some more and just tend to things this way to take my mind off this ridiculousness!

comfortzone

[Mark N]

Comfortzone, I am sorry to hear you are in so much pain and discomfort. Your title describes me on many days even though I am 53. My path has been as a spinal patient and I think you need to have an MRI of your spine. Your pain and weakness certainly sounds like there could be a problem in your cervical spine but it could even be a lumbar problem. I hope your next visit starts to give you some answers.

I started this when I was 30 and you are right it is a rough way to go through mid-life. Good luck.

[Diandra]

Dear CZ,
The good thing about you is that you seem like a person who keeps pushing and searching for answers. Your situation is so frustrating.

There are two things to mess around with. There is this website that I sometimes look at for clues to medical issues. It is pretty basic but sometimes comes up with things I have not considered:
http://symptoms.webmd.com/symptomchecker

The other is, it sounds like you have a pretty solid dx of OA and that is why you have had 4 joint replacement surgeries. Yet, as someone who has struggled with Lyme Disease for almost 20yrs, I have to tell that no one had a clue what was wrong with me for years. Arthritis and neuralgia can be huge components of Lyme Disease. There are also alot of other symptoms(it depends on what strain of Lyme Disease one has).
I just thought you may want to check the other LD symptoms to see if anything else matches up. I have friends who had surgeries, only later to discover that the joint pain or arthritis was caused by LD and once treated with antibiotics, their symptoms were cured. Just a real long shot but thought I should mention it.
Check out the "symptom checklist" in this paper on Lyme Disease:
http://www.ilads.org/burrascano_1102.htm


Honestly, it really sounds like your neuropathy is the after affects of the surgery. I have a friend who has had 2 hip replacements and she also had resulting "pin and needles" down her legs and leg cramps at night that keep her from sleeping. She was told to try either magnesium for leg cramps or quinine(these were from alternative docs as she gave up on her surgeon or primary care doc being able to help her.)

I wish you the best. May you find answers and solutions. Keep pushing.
Diandra

[comfortzone]

Hi.....thanks for your posts Diandra and Mark N. ~~~

I know a long time ago -- like 2000 or something I had the full battery of labs for Lyme Disease and it all came back negative. I was living in the deep woods at the time -- yet no known tics at this locale back then.....yet the docs did check for it.

I sure wish the Ortho doc's wouldn't take it personal or take it out on the patient for less than perfect outcomes....I took the risk and I live with the consequences......I'm not looking for litigation or anything like that ~~ I only ask that the original and only surgeon take a fair look at my knees --- I had to beg for that appt..... which is ridiculous in and of itself. He's so happy to turf to specialists --- but seems reticent to actually entertain the idea that something went wrong, something was wrong, or something is currently wrong...... I know he likes to turf complicated cases because I found an excellent rheumatologist -- he was so enthralled with her dictation that he has since turfed a few other patients to her. When I asked her she said -- yes he has sent me a few rather 'complicated' patients of his -- LOL.....

Complicated is not impossible ... it's simply complicated. I would be relieved to find out that there is indeed some "issues" that could sum up to be relating to the surgeries -- whether it's from the tourniquet application or the surgery itself.....I don't really care -- I just want answers ... I may never get them but I'm putting it out there I will seek for them -- as long as I feel it may help my recovery. If it's a true neuro problem -- same thing -- so be it at least I'll know.......same as if it's a muscle issue etc.

So whether or not neuropathy like symptoms show up on EMG, or muscle weakness show up or not --- I think I understand that ultimately I need a game plan. I need a doc to stick by me and help guide me as to what path to follow.

If I am unable to work as a nurse on my feet for those long shifts.....well what can I do? How long will it take for me to do that? It's been a year --- already! Am I impatient? Perhaps.......but a year to wait for answers to what were big problems right from the get go.......is a long time.....

I looked at my PT records......it's sad really. I was pretty messed up.......that first leg of the first knee was absolutely miserable......like a dead leg with tons of pain.

Okay then -- I guess I'll wait for Neuro on Monday.....and process what the guy has to say.....I've read enough here to learn -- not to be shocked if he says nothing is wrong. Nothing quantifiable by his testing anyway and his physical exam. Not to say I don't have symptoms.....but if he doesn't find a reason for them -- I won't be surprised.

Thanks for your support for sure!!! I'll look into those websites too....

Comfortzone

[Kathi49]

Hi CZ,

I have very similar issues going on and have for a long time. I was lying down a little while ago and had to get up; legs and feet are just burning, aching, tingling and buzzing. And when I wake up in the mornings, I too, walk like I am very old. I had every test imaginable done by Rheumatologist and Neurologist (even Athena Diagnostics) and it comes down to polyneuropathy/Central Pain...as Diandra said...probably after effects of surgery. There was never a definitive cause; everything came back normal not once but twice. Also, some of this is radiculopathy since I have issues with the lumbar. I would just let the Neurologist know you want ALL the tests and he/she will hopefully know what they all consist of. The only two I shied away from were a lumbar puncture and nerve biopsy. In any case, she didn't want to perform the nerve biopsy anyway...said it could make things worse.

Anyway, see what your Neurologist has to say and take it from there. I know it is hard getting an answer; took me about 3 years and as I said, there is no definitive cause I just have to treat the symptoms. You would think they could just say, hey, this is what happened. But for me it didn't pan out that way so I just had to accept it. It is especially true for those with Idiopathic Small Fiber PN.

And I could be way off. But based on what you have said I would tend to agree with Diandra...some form of neuropathy. Hang in there and let us know what your Neuro has to say.

Oops, forgot to add. An EMG will not show neuropathy; it would show pinched nerves but not always. Ask the Neuro or rather the Neuro should do what is called a QSART.