Pain

[snglbear24]

Hi. I started Mino 3 weeks ago. I had mild joint pain but the last few days I have had the worst joint pain and muscle pain. If I am on my feet to long my legs hurt and throb. I have had mild muscle pain but nothing like this ever. I also have stomach issues due to scleroderma but my stomach is a lot worse too. I am wondering if this diease is progressing or if the antibiotic is working. I am also having these weird like pulsing/twitching sensations throughout my muscles. It’s very strange. Anyone else experience this?

Diffused Scleroderma/SLE Overlap
Minocycline June 2016 2 x 100 daily
Culturelle Probiotic 2 x daily
Tumeric 400 mg 3 x daily

[richie]

Hi It is way too early for the medicine to start working — You mention stomach issues -are you taking a PPI as well as probiotics —Anti reflux meds are just about a must for a person with scleroderma —

[snglbear24]

Hi Richie. I am on PPI. So would you just say the diease is progressing at this point?

Diffused Scleroderma/SLE Overlap
Minocycline June 2016 2 x 100 daily
Culturelle Probiotic 2 x daily
Tumeric 400 mg 3 x daily

[Maz]

Hi snglbear24,

Yes, I also had muscle fasiculations and weird pulsating sensations. In my case, I think it was due to the neuro effects of Lyme disease. They did resolve over time. Thyroid issues can also cause weird sensations and many rheumatics have some type of thyroid overlap. Electrolyte deficiencies can also cause this. Have you tried magnesium oil spray to massage into your muscles or Epsom salt baths?

The sudden increase in joint and muscle pain at 3 weeks after starting AP would seem to tie in to Herxing. I typically have started herxes between 3 to 14 days with different antibiotics and initially it went in for several months.

I would suggest researching bovine colostrum for stomach gut issues in addition to probiotics.

Richie is very experienced and right about the time it can take to turn things around with SD. The first year is really about slowing down the freight train to halt progression and then after that time frame, slow subtle improvements usually begin to occur, mostly in a back and forth fashion. Response is variable for everyone, so just a general rule of thumb. It’s worth reading all the SD stories to get an idea of variability and, if memory serves, it took Richie 5 or 6 years for him to confidently say the “remission” word. In the meantime, it’s important to palliate any symptoms to make yourself more comfortable. Some people prefer pharmaceuticals and others prefer more naturopathic supports…or both.

What kept me going in the first year was to read and re-read the Henry Scammell book as well as to read all the posts on the forum. It’s hard in the early days to take it all in, especially while feeling so dreadful, but in no time you’ll be an expert, too, reaching out to others to offer encouragement and support.

If you have a moment, please do add a signature line with your diagnosis and what meds and supps you’re on now, as this can really help to generate responses. Instructions to do this are at the top of the forum in the sticky announcement threads.

[Author]

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