Scared, confused and in pain | Arthritis Information

 

Your story sounds similar to others here.  It seems that people are either diagnosed right away...or it takes years......

 

The fact the pred is helping defintely suggests something inflammatory.  I can't believe the PA at the ER didn't even run labs.  That is crazy.  Definitely call tommorrow and try to get an appointment to the rheumy.  If the date is way off in the future, ask to be put on the cancellation list as well.  I don't know, if I felt that awful, I might even try another ER if the rheumy has a long wait.  One that will run some labs....

 

I hope you get some answers soon. 

Welcome to the board, but sorry you have a need to be here.

 

Your post sounds like the same situation I was in when I was first diagnosed with arthritis. I spent almost 2 years as a semi-invalid in intense pain. I was tested and treated by several rheumatologists, including one of the top doctors in the field.

 

What I experienced:

After multiple treatment trials (with limited results), and much frustration, I finally asked my "top expert" if my diet had anything to do with my symptoms. She responded by informing me that diet was not a significant factor.

 

A short time later I decided to find someone more knowledgeable about dietary factors in arthritis. I looked in my local yellow pages for a nutritional consultant/specialist.... someone with recognized medical credentials. There was only 1 doctor in my area that fit the bill.

 

I went to see him and during the consultation I had to keep getting him back on track to get any details specifically about diet. Even though he was an MD with nutritional expertise he kept wanting to steer me toward treatment requiring continued drug interventions. I had tried all of them with minimal benefit so when I finally got it across to him that I have rheumatologists aplenty and came to him about dietary factors only he then gave me the information.

 

In about 5 minutes he outlined a diet that "might" improve my situation. I thanked him and went back home. I thought about what he had said and decided it certainly couldn't hurt to try it.

 

Long story short: I implemented the dietary changes. Even though I was only able to stick to it about 90% - within 3 weeks 90% of my symptoms disappeared. During this time I did not stop any of the medications my rheumatologist had me on. But with the dramatic improvement from the diet i was able to go back to my rheumatologist and have her eliminate one of the meds (prednisone) and reduce the others.

 

My condition continued to improve. I was finally able to eliminate all the meds and (of course) I devoured any additional information I could find regarding diet and arthritis. Now I no longer need ANY prescription medications and as long as I stay on a good diet I have no problems. I do notice symptoms coming on again if I begin to eat what I shouldn't. So for me it is a lifestyle solution - to eat healthy, avoid prolonged stress and be glad I don't have to pay for some rheumatologist's new swimming pool.

 

I do understand that doctor's reluctance to simply focus on diet. It sounds cynical to say so, but if changing one's diet eliminates the condition, then they have no ongoing income from the patient.

 

I can tell you the dietary advice he gave me in that 5 minutes. It was simply a list of what not to eat and what I should eat. Here it is:

 

The Do not eat list:

 

1. No refined sugars (all forms, no white sugar, no brown sugar, nothing with corn syrup, etc.). Read labels and avoid all foods containing added sugars.

3. No refined flour (white flour) or products containing white flours, cornstarch etc.

4. No red meat.

5. No "fake" foods: artificial sweeteners, fat substitutes, hydrogenated fats etc.

6. No foods containing preservatives, colorings, msg, sulfites, nitrites, etc. (read labels)

7. No fried foods.

8. No milk products, including cheese: some people are sensitive/reactive and don't know it. After a time on this diet you may reintroduce milk but then watch for any adverse reactions.

 

The Do eat list:

 

1. Chicken, fish, eggs. Try to buy all natural. (Whole Foods usually has fish with no sulfite preservatives.)

2. FRESH fruits and vegetables. (Or frozen if you can't find it fresh). Avoid the canned products.

3. Whole grain products: brown rice instead of refined white rice, whole grain breads & pasta, etc.

4. Use virgin olive oil; butter in moderation; take a fish oil/cod liver oil supplement daily.

5. If you feel you need to eat beef, do so infrequently and be sure it is a natural or grass fed beef raised with no antibiotics, hormones, etc. 

6. Eat a green salad daily.

 

In a nutshell, this is a solution anyone can implement. All doctors should recognize that this is compatible with a "first do no harm" approach to treatment.

 

My best regards and I hope you are feeling better soon.

 

 

 

 

 

 

 

Hello Brianna..and I too am sorry you have to be at AI but if there is one place you will get support and good advice, it is here!

You sure have been having a rough time, and with what I know about RA ( d'xed 1 year ago) it does seem to me that RA is what you have. The fact that your symptoms disappeared when you were pregnant point to that also.

I can relate to your problem getting to the bathroom, I found it impossible on a couple of occasions and I pray I never get to that state again. My Rheumy diagnosed and began treatment 10 days after my first appointment and I am in clinical remission right now. Still have some stiffness and pain, but certainly I can live with this level.

It is important to begin aggressive treatment as soon as possible and I hope that happens for you pronto. Even if it means you becoming ' aggressive' with your Doctors to push them for an answer! It is your body, your pain and your life. And they get paid to do a job. I, like the others, am amazed at how you have been treated. It is so indicative that Pred gave you huge relief and to be honest, I would not have minded if my Docs were not sure of a DX but began therapy for RA anyway. A precaution at least.

 

I cant go back to your post to check otherwise I will lose what I have written but do you have swollen joints sometimes? And are your fingers and wrists involved? RA usually affects

both joints so if one knee starts off, the other will too etc.

 

Hattie has written about a diet and I for one, am not totally convinced that it helps but I have posted a link to a trial that you may want to look at.

 

 

 

I hope you have a result very soon, one way or the other. Once you know your enemy, you can arm yourself and you  have many sidekicks here who have enormous experience with this particular foe.

I so feel for you having a wee one to take care of and dealing with this also. There are other mums here who can talk to you about that. Having a supportive partner ( ex or not)counts for heaps too!

Having RA is not the end of the world, there are so many meds out there that give most people their quality of life back so please hang on to that.

 

Take care Brianna and know you have many ears here when ever you need to talk.

 

Lyn  xxx LyndeeNZ2009-04-12 18:21:31Welcome Brianna,

Oh my- I don't know how to tell you to search for posts but there are more than a couple of us that have "The Chair" stories about how bad onset or flare pain can be.

Don't you be worrying yourself about prednisone making inflammation markers- you stay comfortable for now- you hear?  I am sero-negative so no one would ever be able to tell me I have RA 100% but I got my DX within a month based on other criteria such as swelling, hot, red joints, pain & stiffness lasting way way over the amount they say RA should cause, etc. etc.
My hope is that they will put you on a DMARD along with this high dose of prednisone. Methotrexate and 40 mgs. of prednisone was what I needed to jumpstart me back to "normal".
Feel better soon and keep us posted.
One thing I really want to do is write out a bunch of questions for the doctor because my mind reels with them.

Bodak- Hi, thank you for replying.. I wish I would figure it out like this but from day to day I'm not sure how my day is going to be until I wake up.. (which I hate!) so I can't wake up on a real bad day and call them and say hi I'd like to see you today (I actually tried that Friday I asked for an emergency appointment, no go). And I'm at the whim of their calendar. I talked to my stepdad and he says I need to be more proactive and he wants to go with me to my appointment. Guess we'll see how that goes.

Hattie- I'm sorry you've had to endure similar frustrations with getting help, I need to find out what is going on for SURE (even though I'm 99% sure it's RA) and see what the doctor suggests for treatment and then I might consider a diet change, I don't mean any offense to what you're saying I'd just need to do a little more research on that, talk to the rheumy about it and go from there. \I'm glad it helped you so much that is really wonderful!

Justsayno- I'm sorry you're also in this club, out of curiosity I wonder how many of us took years to get diagnosed? I'm guessing the majority maybe?

Lyndee- Hi thank you for replying, I am going to try and be more proactive as you say, I know I NEED to be the funny thing is I kept asking the rheumy I saw before what is going on I am in pain, what can you do, why don't you know what it is etc and she got angry with me and threw up her hands and just said there's nothign I can do basically.
My vit D is really low it sucks, I'm on 50,000units twice a week.

Wanttobe- Hi, I should look up the chair stories, for some reason misery does love company, though right now on 60mg pred I'm doing pretty good. I can tell that inflammaton did some dmg though my joints still hurt and aren't very "stable".. it was the worst episode I've had.. and if they had seen me Friday at the rheumy clijnic, I tried to get in.. I'm sure they would have been pretty proactive. But, what can you do I guess.


Thank you again for the replies.. guess we'll see when I can get in.. I hope the wait is not long (please!)



briannajoy2009-04-13 07:23:04Take pictures of your swelling. Let them know you felt better while pregnant and worse after . This is a common symtem of auto immune disease. Write down everything that happens. Much like you just did. Really a lot of doctors will not do anything until they see the swelling first hand. I do think you are right in getting a new doctor. I just hope it does not take to long. Hello Brianna, welcome!  I am so sorry for your pain but you have come to the right place for some answers.  Get busy putting together a team of doctors to work for you.  You should be able to rely on your PCP to help you out as well as your RD AND they should be able to communicate to one another.  Early aggressive treatment for RA holds the best chance for remission, so be aggressive!  If you run into what you feel is a brick wall with one RD, find another... remember, you know your body better than anyone else so listen to your gut!

Good luck and keep asking questions and posting!
Hi Brianna,  I have had RA for 7 years. I was begun on meds soon enough to prevent joint damage but I could've been helped even sooner if I had gotten out of bed and gone to my dr earlier. I was lucky; as soon as I saw her, she believed me since she'd been my dr for 15yrs. She called me the next day to say my labwork was very significant and she'd already consulted with a rheumatologist. Even being at the top of the cancellation list for an appt, it still took 6-8 weeks. I still need meds to keep my symptoms from worsening. I think I am considered stable at a moderate level. I am so sorry you are caught up in what must seem like a never ending loop of pain and disappointment with physicians who do not appear to be caring or sympathetic.

I can only echo the others who have said to document your signs and symptoms, including your response to medication, continue to seek a doctor with who you can honestly discuss your level of pain and incapacitation, and if necessary go to your local urgent care center (it has been my experience that I receive more appropriate care through urgent care than through the emergency room).

Best wishes, Shug

Hello Bri

I just wanted to update that I finally got scheduled for an appointment, it's April 27th, I guess each doctor had to OK switching care.. yeesh what a pain.

I have been sooooooooo fatigued lately.. it's rather unusual, I mean sometimes I get tired with the pain and what not it takes a toll but it's been awful lately :(

Hopefully my appointment on the 27th goes welll, I'm scared to go, but I'm excited if that makes sense!


being anxious is completely normal..

Brianna, just wanted to say a quick hello and welcome. I read everything you wrote and I'm so sorry you're going through all this pain and the docs are looking the other way. I hope the appointment you've just scheduled will be the golden ticket and this RD will realizes how bad off you are and gets you on a treatment program. I agree the folks in the urgent care centers can be more helpful than the ER. They just can't give you IVs like the ER with morphine and pred for instant (allbeit temp) relief. At least the ones I've been to couldn't. Sorry to be so short, but we're having internet issues. Just wanted to welcome you to the group and send some good vibes your way. I hope you get some much needed relief quickly. Please keep us updated and we're here for support when you need us. Many gentle hugs.  Brianna-

Like many, I have had similar experiences to what you have described and although I experienced a great deal of pain and swelling during that earlier period I did not have any significant joint damage. Hopefully, you won't have any either.

I think a homogenous ANA test is associated with lupus, but not sure on that. Also, not sure if anyone else mentioned it but have you been tested for Lyme disease?

Let us know how May 11th goes and what it turns up. Good luck.Hi Brianna:

I am sorry to hear your frustration.

You certainly know that prednisone, while effective, should not be taken long term.

There is something natural that has helped many people, it is OPC-3, a natural and poweful antioxidant.  It is a powder, dissolved in water, first thing in the morning, that helps reduce inflammation and pain.  If you are interested in learning more, please let me know.

Stay strong.Brianna, best of luck to you!  I would strongly caution you against such things as Runmkm mentions... make sure you know what you are putting in your body, look at the studies to back it up, and beware of claims of miracles.  Also, not a good idea to add a drug to the mix if you are working on a diagnosis.  It is very important you discuss all drugs and supplements with your doctor before taking them.

Best to you and please, keep us updated!
Hi Brianna, I wanted to update on how things have gone. I had a follow up yesterday, she said the labs were actually ok (HUH?) and the xrays were fine, she said she could tell where I had hip surgery when I was a kid. She said I have some kind of inflammatory arthritis (duh..) and she is trying me on a medicine I can't remember the name but she said it was used for malaria before, some weird long name, she said it can take 3 or more months to really work (lovely!). I asked what the prognosis is and he said it really varies, she said she's seen people get really bad within a couple years and she's seen people that are ok with medicine to help. She doesn't know what I will be but she seemed positive. So overall If elt ok with the appointment just upset that the medicine will take 3 months (or more) to work! I have another appointment in a month though mainly to make sure everything is ok with the medicine ie side effects etc. [QUOTE=briannajoy]I wanted to update on how things have gone. I had a follow up yesterday, she said the labs were actually ok (HUH?) and the xrays were fine, she said she could tell where I had hip surgery when I was a kid. She said I have some kind of inflammatory arthritis (duh..) and she is trying me on a medicine I can't remember the name but she said it was used for malaria before, some weird long name, she said it can take 3 or more months to really work (lovely!). I asked what the prognosis is and he said it really varies, she said she's seen people get really bad within a couple years and she's seen people that are ok with medicine to help. She doesn't know what I will be but she seemed positive. So overall If elt ok with the appointment just upset that the medicine will take 3 months (or more) to work! I have another appointment in a month though mainly to make sure everything is ok with the medicine ie side effects etc. [/QUOTE]

Sounds like the medicine is Plaquenil (brand name), hydroxychloroquine (generic name).  It took a few months for it to work for me, but it seems to be doing the trick.
Yes that is the medicine, I still consider it weird she didn't really give me a diagnosis, but she said rheumatology has a lot of grey areas and it's hard to diagnose things sometimes.

I hope this works!


I have taken Plaquenil for a couple of years. I now take it, Methotextrate, and Enbrel. I stopped the Plaquenil for a while because I felt like I was taking too much medicine and it was the most benign of the three. After I was off of it for a couple of weeks, I noticed my pain had definitely increased. I think Plaquenil works very subtlely, and I restarted it once I realized that it was definitely helping.

Don't worry about taking it. It has been used for a very long time and is pretty benign. Make sure you get your eye exam on a regular basis.

Keeping my fingers crossed for you that it works and you feel much better soon. You are going to be okay!


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