5 replies to this topic

[Adalaide]

I noticed 4 years ago, late into one evening that my left ankle was swollen and a little tender. I thought this was a little odd, as I didn't recall a particularly recent injury but thought I would see how it felt in the morning and carried on with my night and went to bed. All initially seemed well in the morning but as the day wore on the swelling and pain came back and so the next day, even though it seemed fine in the morning initially again, I went ahead and made an appointment with the doctor. This led to a follow up a few days later with someone else at the clinic the doctor thought might know more. They did a bunch of tests, but all I particularly remember is an x-ray coming back normal and an ANA coming back kinda high but not alarmingly high. They were worried right off the bat that it was lupus. (To this day, they have not ruled that out.)

Now, I said I didn't recall a particularly recent injury. The reason for this is that while I haven't had any serious injuries at all since getting married (other than head trauma, weirdly enough lol) I do "fall" off the curb out front surprisingly often. What this actually entails isn't usually complete falling down, and I realize now that I have my balance partially back that this was probably largely due to gluten ataxia. I just have a habit of stepping wrong off the curb and twisting an ankle under me, sometimes going down onto a knee, sometimes not. After 4 years I wouldn't be able to recall if I had done so very soon before the swelling started, but it is probably safe to assume I did as this was a regular occurrence at least once a week or so and I was particularly active back then.

Since then the pain has done nothing but gotten worse, along with the swelling. One doctor tried giving me hydrochlorothiazid, which helped a very small bit with the swelling for a week or two. It actually only took a week from the initial symptoms for the swelling to be so bad I couldn't wear normal shoes and was wearing flip flops in Feb. because I couldn't get my foot in anything else. To this day I have trouble buying shoes. It wasn't long before the pain in my foot and ankle seemed unbearable. Still, doctors had no answers. It has been 4 years now, and the swelling and pain go from toe to hip. Laying in bed is painful, sitting in a chair is painful, walking or standing is painful. The only "respite" is waking up with an only moderate pain level. I go to bed each night in so much pain it shocks me to this day that I don't spend every evening curled up in a ball somewhere crying.

Now, about a week ago I started having pain in my left hand and wrist. Not too bad the first evening. Now, a week later it is just awful. In desperation to put my mind at ease and convince myself I am completely paranoid I measured my wrists. It isn't much, but the left is swollen slightly. Between when the pain started and now I had finally poured everything I have into desperate internet searching. If lupus isn't the answer (since they refuse to diagnose me), there has to be an answer somewhere. All I have found that seems to fit my symptoms is CRPS.

Now, I am sick and tired of going to the doctor's office and being looked at in that way that says "if you could follow a gluten free diet you wouldn't be in here bitching." If I have to see one more doctor look at me that way I'll scream. But if it is CRPS, I clearly need to be under a doctor's care. (Or maybe I need to move to Colorado. I'm only a little joking too.) For anyone who has been diagnosed with this, how can I approach my doctor without the whole "great, an internet doctor as a patient" attitude? And, what can I do for myself?

My semi-immediate goals include going caffeine free on March 2. Why wait? Because I will be a sort of psycho when I do it, and I stop babysitting then. It wouldn't be fair to go through withdrawal on a toddler. I am also looking into what sorts of things I can eliminate from my diet that aren't diary that will help.

[ravenwoodglass]

I had this, then called RSD or reflex sympathetic (SP) dystrophy, after surgery on my knee. You may want to ask for a referral to a neurologist who can do electromylogram testing and also a physical therapist may be helpful. It can take a while to resolve but the sooner it is diagnosed the better your final outcome may be. Your doctor works for you so don't be afraid to bring it up with him. Do be very strict with your diet as celiac can impact the nervous system and you want to make absolutely sure that occasional CC isn't making things worse.
When you go caffine free do be sure to reduce gradually as going 'cold turkey' can cause headaches and withdrawl. Perhaps note down the amount you are using and over the course of a few weeks drop down rather than stopping suddenly. You may avoid any withdrawl that way.

[Adalaide]

I looked that up.... um, am I crazy or do they put needles IN ME?! I am so far ignoring the part where my insurance will not pay, at all, under any circumstances, for a specialist or for tests other than blood tests. I probably sound like a fraidy cat with all the little things I'm sort of scared of, but needles get me nearly to the point of panic attack. I have been know to pass out and/or vomit when having blood drawn. Actually, just thinking about this test has me in knots and queasy and close to vomiting. I will though take your advice about the doctor, you are right, s/he works for me! I will march my butt in there and be like look, I may be an "internet doctor" but I also know my body and you've known me for 2 minutes so this is how its gonna be buddy. And if I don't get taken seriously this time, they can have the privilege of kissing the fattest part of my butt when I walk out because I won't be going back to that clinic, ever. (Trying to get in to see "my" doctor is like pulling teeth.)

It has been quite some since I have been CC'd. The last time was due to extreme stupidity, and I noticed that my neuropathy was insanely bad with it. You're right, I can't afford the risks and a reminder to be on my guard is good. Eating out has stopped, with the exception of birthdays and our anniversary, so three times a year, and I go to very safe places. I know it is still a risk but I can't live in a bubble or give up every semblance of a normal life or what is the point?

I know the most sensible thing to do with caffeine is go slow, reduce withdrawal and all that. Been there, tried that. I have also tried simply consuming it only in moderation. Turns out, I have about as much willpower around it as a toddler left in a room full of cookie jars who is told to only eat one. As if. I know me well enough to know to know that I will keep exactly 1 can of dew on hand. I will go cold turkey. My first day without I will likely be miserable but sleep through most, my second day I'll pop that can to stave off the worst of the headache. After that, it is all over but the crying. I have done this twice before but always come back to it. This time, I am banning it from the house. My husband can just deal with it like a grown up, and go to McDonald's for a fountain drink.

[ravenwoodglass]

Sorry to have scared you with the mention of the test. The electromylogram is not as bad as it sounds. The needles are very, very fine and I didn't even really feel them even on the leg that had normal nerve function. I don't know if they would even want or need to do one on you.
Do keep looking for the answer to your issues. The main thing they did when they treated my RSD was physical therapy and that helped a great deal. I hope they can figure this out and that the issues you are having resolve soon.

[Adalaide]

Well it feels like I waited for eternity, but I finally saw the doctor today. He didn't say it isn't CRPS, and seemed to think that the symptoms generally more or less fit, but the problem he has is that I didn't suffer from a severe or traumatic injury. The problem I'm having is that I am at the point where after about 6 months free of pain meds to try to get a handle on what is going on with my body, I find that all I get from taking OTC anti-inflammatory meds is the edge off. It isn't enough relief to keep me from crying myself to sleep on the worst nights. I am seriously considering moving to Colorado, and I'm not even a little kidding.

 

He did suggest that since I am already seeing a neurologist to just bring it up at my next appointment, which I guess I'll do. I'm sure he'll want to do all sorts of expensive tests I can't afford. The other suggestion was to try some sort of regular daily medication. I told him that I won't just take whatever he suggests and to give me options and I would go home and research them. He suggested Lyrica which I wasn't happy with when I was on it before, don't know if it is gluten free, but didn't have any terrible side effects probably because I couldn't absorb it but that could also be why it didn't really help either. Savella, which as I see at first glance is another fibro med. Thrilling. The third recommendation is neurontin. At first glance this looks most promising as I am quite sure that my fibro issues are fine and don't need to be addressed with meds. This is one leg, one arm, not the all over fibro crap.

 

Anyway, I'll research the three and sit without a diagnosis until I see the neuro I guess. I'm not excited about the idea of taking medication for an undiagnosed medical condition. In the last year I have turned my outlook around and no longer have a desire to treat my symptoms without a cause and knowing if the cause can be treated instead. In this case though, until a cause can be found all I can do is treat because I'm going crazy with the pain. I'm trying to stay active by doing a few minutes a day on my elliptical which is all I can handle. I also cook dinner every night, do our laundry and some light cleaning so I'm not just laying around but I wish I could be more active to help. Right now though all it does is hurt.

 

The doc did do more bloodwork. Rechecking my folate to make sure my supplement is helping and doing an ANA and sed rate. I'll have answers about those results in a few days.

[Adalaide]

Well, after reading up on Neurontin, finding out is the only of the three on the market long enough to have a generic I was automatically most comfortable with it. None of it's side effects seem horrible and so I decided to check out the others anyway. Seems that Lyrica shouldn't be mixed with my topiramate and that Savella is insanely dangerous to mix with the Imitrex I take if I have a bad reaction to a food. I could just not take migraine meds for a migraine, but I have no interest in putting myself on a daily med that takes away my option for migraine relief. Especially since summer is coming and there are so many fruits I want to try to see if I can have them!

 

Looks like I'll be on Neurontin for a while, until I can get answers. I'll start calling around to pharmacies tomorrow, then manufacturers so I know who to tell the doc to fax the scrip to when he calls with my test results. Now, I just have to hang on to a thread of hope that this will help and that the neurologist isn't an.... well to be blunt and honest, an a$$hat.