muscle tightness, headaches, fatigue

[Lily A]

For the past 4 or 5 days I have been having an incredible amount of muscle tightness in the front and back of my neck, lower back  and calves.  it is hard to keep my head up sometimes.  I also have terrible headaches everyday am very fatigued and feel like crap all the time.
I have been on AP about 3 weeks 100mg/2x/day. Revatio 20mg/3x/day Procardia 30mg 1/day. 
Any suggestions?
LilyA

[linda]

Do you have access to a sauna? It sounds like maybe a herx, is this a symptom that you had with your SD before you started AP? If not, it could still be a herx, sometimes the antibiotics stir up pockets of infection that we never knew about. There are some good detox methods you can try. Massages, drink lots of water or the lemon/olive oil drink, saunas, and others that you can research here. Sorry to hear about this new problem, I hope it resolves soon.

BTW, what antibiotic are you on? There is a class of antibiotics that are notorious for muscle pain and tendon damage. Levaquin is one of the antibiotics in this group, I think they are called the quinines or chloroquinines. If you're on one of the abx in this class, you need to discontinue it immediately and call your doctor, as it can cause permanent damage.

I noticed also that you are on Procardia, could this be a side effect of this drug or a bad interaction btn one of your meds and the abx? You should check if they are contraindicated just to be safe. If it is a drug interaction or you are on Levaquin, don't despair, there are other abx that you can take. You can even adjust the dose of the antibiotic you are currently on, maybe start at a lower dose to reduce the herx, if that's all this is.

linda

One other thing, and I mention this not knowing why you're taking procardia; there is some evidence that these bacteria can hang out in our heart tissue. If you have a heart condition, it's probably a good idea to watch for any new cardiac symptoms, and to let your cardiologist know that you are taking long term antibiotics.  I've not read any posts about herxes that affect the heart on this site, but since you are on procardia I thought I'd mention it.

[Lily A]

Thanks Linda,
I am on Minocycline.  I did not have any of these symptoms before except the fatigue.
I thought it might be the herxing I just was not sure.
LilyA

[Mumof3]

I think you might be herxing. When I started AP, I didn't really have any symptoms of SD (other than positive bloodwork). I started herxing immediately after starting on 100 mg M, W and F. My biggest complaint was muscle pain in my upper back that was intolerable. I also had headaches. It turned out to be herxing. I still get the muscle pain once in a while but not as bad and it usually disappears. The saunas really help if you have access to one. I am using one at my chiropractor/massage therapists office until we buy ours.

[JOJO19551]

I did not start to feel better until 4 months of oral minocycline, I actually got worse and just had to hang in there.  I had tightness everywhere, had to sit on the edge of bed for a minute before I could stand up. Now I am much better.  Hang in there and take the next few months as easy as you can.  I always worked but my husband carried the load at home.  Best wishes, JoAnn

P.S.–I don't know if what I had was herxing or not.  I just played the survival game.

[MaryP]

[user=514]JOJO19551[/user] wrote:

P.S.–I don't know if what I had was herxing or not.  I just played the survival game.

Boy, you hit the nail right on the head!  The survival game…… When I was desperately SD sick, there were times when I just needed to rest or sleep.  No phone, no housework, no getting dressed on the weekends. And, I couldn't think of a way to phrase how I felt.  I'm happy to say that I got to be an excellent player at the survival game and moved on to the back-to-living game.  I'm gonna steal that phrase of yours, if you don't mind!

[Lily A]

Thank you all for your responses.  I did not think I would have a problem with herxing because my scleroderma is the limited Crest type and the major problem prior to starting AP was Raynauds.
Is there anyone out there with crest that has had these type of symptoms?
How long should I expect them to last?
JOJO 4 months is a long time.  That must have been really hard.  I am so glad you are feeling better.
LilyA

[JeffN]

Lily – I have CREST / Limited. I'm on the same dosage as you are. My first four months or so of AP I also was dealing with anemia caused by GAVE so this period is confusing as to what was causing what. I had many aches and pains from the SD and the anemia had me very run down. During this period my muscle and joint pain did get worse and I think there may have been some neck pain but I had neck pain earlier with the SD. The joint, leg, and lower back pain may have been a Herx type thing as it did appear after I began mino. By the end of the fourth month on mino these pains were greatly reduced and my blood levels were almost normal. Fatigue and headaches had always been a part of my SD but the anemia and GAVE added a flu like aspect to the SD.

So you may be herxing – I found there certainly was a two steps forward one step back aspect for a while. I hope what ever is causing your pain to be resolved soon. Hang in there.

 

[marg]

Lily, I know that SD patients usually take antibiotics every day – however, to me it sounds like you're starting out with a high dosage, both in days of the week and daily amounts.

My adult daughter has RA and was prescribed the same amount of minocin as you're taking. She had terrible reactions, now I can't say if they were like yours. In any event when she went to pulsing on a lower dose, she improved quite quickly. Even if your goal is every day at this dose, would your doctor agree to starting lower and stepping up gradually?

BTW, my daughter has SD, mild lesions on one upper arm and on her stomach. The Minocin has reduced the lesions on her arm, not so much on her stomach. It might be more effective for the SD if she were not pulsing and taking only 100mg a day….

Hold on, this does work!

[DianeWI]

Hi Lily,

I often get the same symptoms.  What helps me is large doses of calcium/magnesium.  For me…I think my body is depleted and with all the gut problems, I'm possibly not assimilating it all and it takes large doses to pull me out of it.  In fact…the last few days I have had to go back on large doses because of the increased pain and spasming.

Diane

[linda]

How much magnesium are you taking when you take large doses? I've started taking it, but the recommended dose is 350 mg/day, which doesn't seem to be helping me.

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