What's happening?

[Maria3667]

Hi everyone,

Sjogren's seems to be getting worse. I have more pain in my knees, feet, shoulders and body is a whole is feeling tired.
Despite taking loads of vits, supplements and meds. Also working out is becomming troublesome. My feet hurt and swell up when I run. After just 5 minutes I'm a shambles. I tremble and shake after pulling weights (low weights).

I feel like I'm heading towards rheumatism or something like it. Prednison is often prescribed in such cases, but I really don't want to take this because of weight gain and other side effects. Plaquenil causes an allergic reaction so can't take this.

Should I prepare myself for things getting worse? Like selling my house and buying something cheap? Would it be better if I moved to a warm climate?

What's happening?

Maria

[Epson]

Maria,

I think you need fortune teller, no one else can answer that question.  You might just be going through a phase that some of go through occasionally or it might be that your symptoms are getting worse.

The best advise I can give you is to find a medication that will help alleviate your symptoms, I personally like prednisone and have no weight gain issues, unfortunately you don't want to take it long term.

As far as selling your house, this is the wrong time for selling house, unless you have to.

[Sjenny]

Maria,

Sounds like you are in the middle of a bad flare - I'm sorry you are going through this.  There was an interesting thread on using devil's claw for pain here on the forum https://sjogrensworld.org/index.php?topic=8064.0

I don't know anything about it from personal experience, just it is probably something people should check with their doctor about before taking (and of course, the doc will know nothing about it).

Prednisone and the DMARDs are other options too.

Sue

[lesleyjoy]

Hi Maria, I agree with the others, it sounds like you're in a flare. It would be an idea to give up the running, gym etc and just rest as much as you can until this passes then get back to it slowly. A walk each day if you can manage it would be of benefit and good for your spirits 
You don't need to go onto pred if you don't want to, I've never had it nor plaquinel. I use Brufen Retard 800mgs if and when I need them. They're slow release antiflammatories and easier on the stomach than Voltaran etc. Ease up on the vitamins and supplements as they can make things worse although minerals seem good, especially magnesium. Fish oil and Oil of Primrose are good for muscle inflammation also.

I hope you get through this soon and I think being fit helps  Don't think of selling up...see how you feel when the flare passes!
Take care Lesley (NZ)

[lynnmarie219]

Hi Maria,


I'm so sorry that you are feeling so badly. Have you talked to your doctor about this latest problem of increased pain and fatigue...it may very well be a flare or it could be something else. To be on the safe side..if it doesn't feel better in a few days I would call your doc and try to get in to see him/her.

Let them know all of the meds (including vitramins, minerals, herbs, supplements) that you currently take and discuss with him what your plan of action should be. Sometimes we take things over the counter that we think may be helpful but they indeed may not be or interact with other things we take in a negative way.

I hope you feel better soon.....and don't make any abrupt decisions when you are feeling so badly.

Hugs to you....let us know what you find out or if you are feeling better!

[Chico]

Maria:

I too was ready to move out of house this winter into something much smaller and change climates if it would help at all. Lucky for me I wore out so quickly I couldn't contemplate even packing my suitcase for an overnight trip. And now realize trying to sell house in this economy is not a good idea if even possible.

So have concentrated on getting well, resting. Did eliminate every med and Vitamin I could while adjusting to new ones. Now just beginning to a little walk again on good days. These should be coming soon even if it's under 20 degrees and snowing hard right now.

Best wishes to you and be easy with yourself for awhile.

Chico

[pudmott]

Maria,

I would certainly try to rest up as much as possible. And definately look at the vits minerals and supplements. it could be that one or a combination of them is actually boosting your immune system and making you even more sick. The last thing we need is a boost in our immune system as it is already in overdrive and attacking our bodies.

it also as other have said could be a flare. It might be worth a trip to the doc for a review and also get them to check the vits minerals and supplements you are taking to make sure it is actually helping you.

definately dont push yourself tho cause that also will make you more unwell. Unfortunaltey with Auto immune issues we have to learn to pace ourselves and adjust to a new kind of normal

Pud

[Maria3667]

Hi everyone,

Thanks so much for your support!! 
I don't know if it's a flare, never had one before.

@ Sjenny: I had been looking for the link about Devil's Claw but couldn't find it. Might try this.

My current regiment of vits/supps is:
* 1 zinc tablet (against tooth decay)
* 50 mg vit. B
* 400 mg vit E oil
* 500 mg Evening Primrose Oil
* 1000 mg magnesium
* 3000 mg vit C
* 4000 mg flax seed oil
* 6000 mg fish oil
* salagen
* thyroid meds

Anything conflicting with this?

Thanks for helping!

Maria

[Scottietottie]

Hi the zinc tablet is good for staving off hair thinning from thyroid problems too. I was told that selenium was good because it heps T4 to convert into T3.
If its an underactive thyroid you have - check its levels too. I thought my SjS was flaring but it was actually my thyroid. Aches and pains have subsided quite a lot since my thyroid meds were 'upped'.

Take care - Scottie 

[Maria3667]

Hi Scottie,

Yeah, getting levelled out on thyroid meds is no hanky!

But you know, if I up the meds, I'm scared I'm going to get scared again... And I don't think it's necessary.
I don't have signs of being undermedicated, but I'll get my levels checked next time.

Thanks for the tip!

Maria

[Chico]

Maria,

My GP suggested taking only one complete multivitamin and all prescription meds while in a flare or when adjusting to a new med with side effects, right now it's Plaquenil.

Sure makes life simpler and less stressful.

Chico

[Patze]

Hi Maria,

I'm not in the medical field (never was, never will be), I'm with Scottie, have you had your thyroid checked lately?  It could be that you just need to have your thyroid meds adjusted.

Like the others have said, have you been able to talk to your doctor about your new symptoms?  It could be something new developing, or it could also be a flare, so hard to tell.

Please do talk to your doctor soon as he is the one that can best tell you if something is conflicting or not, and you should speak to him prior to trying anything new, especially if it's OTC. 

Please let us know what your doctor says.

Take care -

Patze

[salsen]

Don't rush to move yet.  I live in south Louisiana with warm humid weather two-thirds of the year.  That has not stopped flares or days of great fatigue and joint pain.  If anything it puts my neuropathy into a real tailspin.  But I am glad to be where I am because I know if our fairly mild winters bother me, I know I couldn't handle being further north.

[Sjenny]

Hi Maria:

Optimizing the thyroid levels is pretty complicated.  Sometimes you can have adequate thyroid in your system but it is not getting to the cells because your adrenal glands are fatigued and not putting forth adequate cortisol.  Or your B12 levels or ferritin (iron) levels are too low.  Blood tests and saliva tests can determine if any of this is the problem.  See http://www.stopthethyroidmadness.com/adrenal-info/

Hope that you have a really good doc and feel better soon.

Sue

[Maria3667]

Hi Sjenny,

My symptoms do seem to resemble adrenal weakness expressed in the article.
I will need to do some further research to see if it's actually the case for me.

Thanks for posting!

Best wishes,
Maria