Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Crps?


Adalaide

Recommended Posts

Adalaide Mentor

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 b%$@#ing." 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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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 Mentor

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 Mentor

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.

  • 3 weeks later...
Adalaide Mentor

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 Mentor

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,182
    • Most Online (within 30 mins)
      7,748

    Portia
    Newest Member
    Portia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...