In a lot of pain

[Adaashl]

Dry eye and fatigue used to be my primary complaints with Sjogrens. For the past few weeks, my eyes have felt better and the fatigue comes and goes. It doesn't seem as debilitating as it used to be, though I certainly have my days.

My new symptoms are PAIN. I'm having a lot of pain and soreness in my lower back and legs. My ankles are also very  very sore. I have a widespread muscular ache almost as if I've done a very very strenuous workout  (when I haven't). I have tightness in my upper back sometimes and so much tension in my body sometimes that I feel the need to "chew" my tongue  (perhaps similar to a grinding of the teeth).
My legs will also become tight and heavy as I'm walking...almost as if I'm trying to walk through a swimming pool with weights on my legs.  I'll also experience tingling here and there in my arms and legs occasionally. When I get out of bed in the morning, I am hobbling like an old woman and I'm 32 years old. Mild Exercise such as walking or cleaning seems to make me feel worse rather than better. I used to walk my dog a mile or 2 without trouble and now it's hard to even go a few blocks.

In April I've seen my rheumy and mentioned the pain and wasn't having a bad pain day so he said I "could" have fibro but he's have to catch me on a bad one. I've since become worse. I'm seeing dr vivino.  He says I may need ivig for an immune deficiency and if I do then that may help the muscle pain and if I don't need it i may need to get further muscle testing. Also I'm losing an alarming amount of hair in the shower. Luckily my hair is very thick and not showing any sing of loss.

I'm very very anxious and depressed about this. I feel I have no quality of life left.  My only med I'm on for Sjogrens is plaquenil. Does anyone have any idea or thoughts about this current pain? What steps should I take to pursue this? What should be my next plan of action if anything? Am I just in a bad flare? Please offer any suggestions and thank you in advance.

Other rambling thoughts...should also note my cpk muscle enzymes are always slightly elevated in the 300-500 range. Dr said we would just wait and keep an eye on those. Only other diagnosis was a spondylolisthesis from an xray a chiro did years ago which I guess is a slippage of vertebrae. No treatment given for that. I'm also overweight which I know doesn't help any of this and currently just started really trying to eat as healthy as possible. Thanks.

[Joe S.]

First, welcome to the forum. Your pain is real. The pain cycle of pain and anxiety feeds on its self and you need to know how to break it.
1. Do not panic. That will make the intensity of your pain worse.
2. Breath. When you have pain, your muscles form a splinting action. This blocks the oxygen to them and creates lactic acid and more pain. By breathing through the pain you can break this part of the pain cycle.
3. Meditation. I have a simple meditation that helps me when I am in pain to break the cycle. I have to practice the meditation when I am not in pain so it works better when I am in pain. I also use it to sleep. Get in a comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. Breathe in and think "I am"; Breathe out and think "calm". Repeat. Try to keep it up for 15 minutes. If you loose focus, start again.

Knowledge of pain is power over pain.