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#492891 - 08/07/13 11:37 AM What is happening to me?
Margot62 Offline
New_Member

Registered: 08/07/13
Posts: 2
Hi Everyone,

I am just starting a difficult journey and have some questions.

A few weeks ago, I woke up and my neck hurt, my feet hurt, both elbows and both knees. Looking back, I recall that my fingers often felt a little stiff and tender--especially my thumbs--and occasionally I'd get up after sitting for a while and feel a little stiff, but only for a short time after moving again.

Also note that I gave up gluten two years ago. I was pretty sick by the time I realized that it was gluten--and I felt much better after abstaining. I didn't get the Celiac test because I refused to start eating gluten again to be tested.

Also note that I had some neurological symptoms ten years ago. They thought maybe it was MS but repeated MRI scans over the years have been clear. Since giving up gluten, I corrected a host of problems in my body---interstitial cystitis, reflux, etc. Also note that I am B-12 deficient and must inject it once a month.

But this summer, things changed. The weird joint pain came out of nowhere. Tests were normal. SED rate is 10. It's been almost 3 weeks and I was put on steroids ranging from 4 mg. to 20. I got down to 4 mg., weaned off, and the minute I got off the steroids, it all came back full speed-and then some. I put myself back on steroids today and am kind of flabbergasted that something is really wrong with me. I think the steroids tricked me into thinking I was okay again.

Of course, the rheumy doctor acts as if he's a bit at a loss. The normal tests results threw him, I think. I pointed out in a phone call to him last week that tests can come back normal in RA at first. My neck constantly hurts, joints in wrist, elbows, knees, shoulders, stiff fingers.

I don't want to take the steroids, but if I don't, there it all is again. I feel like I set myself back and made myself worse by not taking them for just one day!

The pain kind of travels a bit. One minute my knee will hurt and the next my elbow, etc., although some of the pain is static.

My grandmother had RA.

I see the reumy this Wed. How should I approach him with all of this? I am certainly not trying to diagnose myself, but whatever this is, it certainly acts like RA. And whatever this is, I am frightened and confused. I am very proactive and don't want to sit around waiting for it to get worse while my doctor makes up his mind about what I have. I know patience is a virtue, but having to stay on steroids or be in pain doesn't seem like much of a solution to me.

Any help you can offer would be appreciated. What to talk about with the doctor, what my symptoms sound like, etc.

Things I have tried beyond the steroids are baths, advil, napoxin, eating really well and using a light sleeping aid to help me go to sleep. (The steroids make it hard to sleep.)

Thank you so much.

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#492990 - 08/09/13 01:01 PM Re: What is happening to me? [Re: Margot62]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1168
Hi There,
I was dxd with RA and I have been on prednisone too. My labs were always really high out of range, but when they were in normal range I was in a lot of pain too, so I can relate to you.

My first question is: When you weaned off the prednisone did you do it correctly? If you go too fast it will cause a lot of pain and I mean just as much pain as you were in when you started. It caused me all over body and joint pain when I weaned just one mg.(just do a internet search you will see many things about the pain weaning from steroids causes OUCH!)

Do you have visible swelling? I was just curious. Where is your worst pain wrists, knees, neck?
If you could fast with just juice for 3 days see if your pain improves if it does it might be food related.

My RA improves with a strict diet. I have tried Remicade, humira, orencia , metheltrexate and some nsaids. I had pain with all of them except remicade, but my heart had a weird reaction to it and my dr sent me to the ER and took me off of it .I still could not eat every food I wanted to eat when on biologics so I just asked my rheumy if I could take a break from the biologics for awhile, to my surprise my anemia went away and I have been feeling the best this year since I started juicing and juice fasting this year.
I learned from a fried and my rheumy that not all RA cases look alike. I get si joint pain, but some with RA say they have no SI joint pain.
I hope you feel better, and if you weaned off the pred/steroids too fast it could have certainly left you feeling achy and in pain. Up to 3 weeks I read after you take pred you can feel the side effects. I have had to wean 1/2 a mg a month because it hurt so bad to wean off of it faster than that.

One more thing that is good news. I have read when your joint pain travels from joint to joint that is a good thing because it has not settled in one knee and then it starts to destroy it. I had an elbow that was stiff and stuck at an angle for two whole years, just recently after juicing alot, it started to straighten out little by little until one day I could not believe it was straight again!! I had not been able to put my weight on it for such a long time. I still thank God for this lil victory everyday.

Sorry such a long post. Hope your visit with your rheumy went well. Take care
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

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#493071 - 08/12/13 11:07 AM Re: What is happening to me? [Re: Margot62]
Margot62 Offline
New_Member

Registered: 08/07/13
Posts: 2
Thank you so much for responding. I was hoping someone would.

This week has been an interesting one, with quite a few ups and downs.

I did wean gradually from steroids, or so I thought. My rheumy had me go down gradually from 4 to 3 to 2 to 1, but the day I got to zero it was really quite bad. It started all up again and was traveling around to different joints. It was very strange, very painful. I hate being on the steroids because I feel weird on them but I don't think I have a choice right now.

Yes, I have been juicing too! I am going to try to fast with just the juices after my dr. appt. on Wednesday. But the problem is when I'm on steroids it is hard to tell what is making me better--the diet or the steroids.

Something tells me I am in for the battle of my life. I have decided to try the antibiotic route at first. Has anyone else tried that?

My neck hurts the most, along with my elbows. But the other day the pain traveled to many joints and settled in a few. I did have a swollen spot on my hand, but I don't have a whole lot of swelling overall.

Thanks for answering...

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#493173 - 08/14/13 04:02 PM Re: What is happening to me? [Re: Margot62]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1168
Hi again,

I know what you mean when you say you don't know what is working, the steroids or diet. I tried antibiotics over and over for a year and all I did was flare up and end up in a lot more pain, but that was me, some do great and get better.?

If the juicing does not work you can always try juice fasting that helped me the most in my few years with RA. To me the juice fasting sort of makes me feel in control of my pain instead of it on control of me, I feel so much better now, hopefully it stays that way. Whatever you choose for relief, I hope it work and I hope the best of health to you, take care!
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

Top
#493489 - 08/20/13 08:32 PM Re: What is happening to me? [Re: Margot62]
Possi Offline
Addicted_to_AS_Kickin

Registered: 11/13/02
Posts: 6920
Loc: Oklahoma where the wind comes...
ValsMum told you about all of the things that I would have. Especially about going off the Pred extremely slow. I have at times even had to go back up 1/2 or 1 mg. and wait a while and try again.

I have an overlap of autoimmune diseases; RA, AS, SLE and other things. This is something you might think about too. If you have one of them, the others are close by.

I hope your dr. is easy to talk to and will listen. Just tell him everything you told us.

I hope you find something that works. Are you taking any pain meds? I am not treating mine and haven't for a few years because of bad side effects to the biologics and steroids long-term causing lots of problems. The pain meds let me live a better life.

Blessings.

Possi
_________________________


Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."


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#496936 - 11/01/13 06:11 PM Re: What is happening to me? [Re: Margot62]
Meagain Offline
New_Member

Registered: 10/30/13
Posts: 12
Loc: Australia
Has your rheumy mentioned the possibility that this might be fibromyalgia?

Your symptoms sound very much like my own except that I have a positive RF and positive ANA.

What I do not understand is why you are responding to the steroid treatment (I have never had this treatment for my flares).

You can have fibro as an underlying secondary condition, and still have RA or even AS depending upon your indicators.

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#496937 - 11/01/13 06:31 PM Re: What is happening to me? [Re: Possi]
Meagain Offline
New_Member

Registered: 10/30/13
Posts: 12
Loc: Australia
Originally Posted By: Possi
ValsMum told you about all of the things that I would have. Especially about going off the Pred extremely slow. I have at times even had to go back up 1/2 or 1 mg. and wait a while and try again.

I have an overlap of autoimmune diseases; RA, AS, SLE and other things. This is something you might think about too. If you have one of them, the others are close by.

I hope your dr. is easy to talk to and will listen. Just tell him everything you told us.

I hope you find something that works. Are you taking any pain meds? I am not treating mine and haven't for a few years because of bad side effects to the biologics and steroids long-term causing lots of problems. The pain meds let me live a better life.

Blessings.

Possi


Yes, what Possi said is something to consider. My official diagnosis changed to MCTD which is an overlap of diseases including RA and SLE and it looks like I am slipping into RA.

The other possibility is underlying fibromyalgia that could be behind what you are experiencing at the present time.

Things to consider here include weather conditions. You should start taking note of when you start really hurting and when you feel better, by noting the actual weather conditions, including the barometric pressure. This is something that really affects my own condition.

Also, some other things to consider, are you going through menopause? This could have an impact upon how much you hurt.

Also, I think it is worthwhile substituting the "p" word for other words that are not as powerful. The purpose is to trick your brain into downgrading the pain signals. I have been doing this for several years, and I am lucky to have rheumys who understand what I am doing and are in fact encouraging when it comes to using this particular mind game.

When a flare happens, and I had a bad one this week, try and relax yourself through it. That can be hard,I known. I did find that a medication that made me drowsy was the best remedy. A bit of a daytime rest helped to bring the flare under control. One thing about relaxation during a flare is the ability to recognzie what is happening, acknowledging it and then relaxing, getting on with life.

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