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Some Answers on the Way?

May 22, 2017 10:34 AM

My health, as of late, has been appalling. For nine–hell, nearly ten months now, I’ve been in widespread musculoskeletal pain. It ranges from mildly irritating to thought-consuming. Sharp, throbbing. It could last a fee seconds or it could last an hour. It has no rhyme or reason.

At bedtime, my legs are restless. When I get up in the morning, my hips pop. Muscle spasm and trembling hands. Some days, the gym is a piece of cake; others, I can barely get through a set.

A week ago I went to my second doctor with this problem. The first disregarded me and based on bloodwork requested that I take B12 and Vitamin D. If there was an improvement, it was not marked. I’m still taking them, hoping it has an effect. This second doctor tests me for Lyme, ANA , etc.

ANA is the only one that comes back positive.

A test came back positive and all at once I was relieved and scared.

“Finally,” I thought, “Some answers!”

Then– “ Holy shit… I might get answers.”

Nothing is worse than living in diagnosis limbo. And until I see the rhumetologist in July, that is where I must pitch my tent.

I am all at once afraid and eager. And I am so tired of waiting.

May 22, 2017 11:32 AM

Welcome to our community family BattlinKat! We are all here to support each other. This is a very loving, caring and supportive community.

I'm sorry you're still waiting for answers. I was there beginning in 2007, and since then have gained way too many newly diagnosed problems I'm struggling to remember. Among those are hypothyroidism, fibromyalgia, and Sjogrens, all which combine to severe flare ups at times. Neuropathy and myofascial pain go along with them too, and like you I spend many restless & pain-filled nights and days. But my pain levels always worsen as night comes on.

I have taken B12, B9, D3, and Magnesium suplements for several years, with slight help. I recently added Cosamin ASU for my joints, and I have noticed a little more help. I have rx muscle relaxers, tramadol and many other meds I have to take daily, so many I must use a med reminder app. LOL

Something I learned after my diagnoses started jumping on board is that having any Autoimmune (AI) disease/disorder opens you up to many other coexisting alongside each other.
Another thing I learned is how too much sugar in my diet causes increased inflammation and pain. A third, but certainly not the last thing learned (all from others in the community) is that refocusing my thoughts away from pain to something else, like relaxing, gentle stretching, reading, puzzles, games, etc, is very helpful in keeping control of my pain instead of letting it control me.

You are where many of us have been. Many various diseases/disorders/syndromes share multiple symptoms, so getting the right diagnos(sis/ses) can take months or years. Just keep pressing for answers until you feel you have the answers. Get 2nd or 3rd opinions if necessary, but don't give up. Sending you hugs, love & prayers you get answers soon! ☺❤🌹

May 22, 2017 12:32 PM

Welcome! Sorry you're going through that. Gotta say it sounds exactly like me when it first started back when I turned 30. I was diagnosed with RA. Few yrs later Fibro. More recently discovered I also have lots of spine probs too.

We're here for you during waiting in limbo. Sounds like you're doing all right things so far.

Things sometimes help me are Epsom salt baths, biofreeze or Lidocain spray, ice or heat, gentle stretches.

May 22, 2017 1:49 PM

Welcome to the community. Sorry that you have to wait for a diagnoses. I was dx with fibro in 2008. Tis year I was dx with arthritis in my hips. The xray showed a problem in my spine. Tomorrow I see a back specialist. Thursday I see a specialist for my hips. It's just 1 thing after another.

May 24, 2017 1:24 AM

Welcome to the group 😊 I'm sorry to hear that you are going through this. Best of luck

Sending prayers your way..

May 25, 2017 9:43 PM

Am late but wanted to welcome you to our group. I remember that feeling of being close to getting answers and yet terrigied at the same time. I hope you have a goid doctor now tjat will work with you to find answers and tje best treatments for you - whatever they find.

Jan 07, 2018 9:37 PM

My legs and arms , w/o pain meds, ache ,like a continuous gnawing and throbbing pain where you have to move bc “it might just help” . In Jan 203 I went to Cleveland Clinic and DX with POTS, an autonomic nerve disorder and had a tilt table test to confirm. The pain caused by nerve damage bc blood pooling in the extremities and stomach.
B4 a WORKING pain meds was started, I went 31 days with only intermittent periods of sleep at 5-15 min intervals totaling maybe 72 hrs combined, when pain started again after nice massage or hot bath. Dr put me on the Fentynal patch after trying every other meds for pain never touched it.


If anyone has taken a “statin” the rx for cholesterol DX, a side effect often is just like what I have 24/7. My mom and I were put on it and mom called and said that there is NO WAY ONE COULD HAVE QUALITY LIFE IF HAD THIS PAIN LIKE I DO. both of us stoped asap when for me, that breakthrough pain appeared.


But now with Opoid issue in USA, I am paying the price for the abusers issues. Lowering dosage til gets to ?
Good luck and pray you find the miracle fix needed.

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