Predictable Raynauds

[mlouise]

Hi, everybody, I am feeling so much better than 6 months ago. I will be heading to my AP doc in Philadelphia this Tuesday. I am planning to get another week’s worth of Clindy IV treatments next week. I had a simple question. Has anyone else experienced predictable Raynauds. My Raynauds acts up everyday from 11:00am til about 1:00pm, also from 4:30pm til 6:00pm and again from 8:00-9:30pm. It doesn’t matter what I am doing it is always at these times. It can occur during other extreme circumstances as well. I can be wearing bed buddy mittens, have a heating blanket on high and sipping hot tea and I will still have the Raynauds at 4:30pm. Anyone else have this experience? Can anyone tell me why? mlouise

[Maz]

@mlouise wrote:

I had a simple question. Has anyone else experienced predictable Raynauds. My Raynauds acts up everyday from 11:00am til about 1:00pm, also from 4:30pm til 6:00pm and again from 8:00-9:30pm.

MLouise, it’s just terrific to hear you’re feeling so much better! All the best for your doc appt and next round of clindy IVs. 🙂

I had a touch of Raynaud’s in the beginning, too, but it did get better with abx therapy. I know in severe cases it can take much longer and sometimes can be one of those last lingering symptoms (due to vascular damage from SD). The only thing I can think of that may or may not be relevant is that thyroid hormone has a tendency to fluctuate throughout the day and these hormones do affect metabolism and the body’s thermostat. Have you had your thyroid tested lately? If not, could your AP doc test you with a thyroid panel when you go to have a check? If already on thyroid meds, I have heard of people splitting their dose (morning and afternoon) to prevent fatigue later in the day and wonder if this might help…but would need to check with a doc on this. 😉

[Wayne]

Hi Louise,

My Raynauds plays up just about every morning when I first get up, and the temp here in Perth has been really hot (min 30c to max 40c) for the past month or so, setting a new record. I really dont know how you guys survive in a cold climate, I’m not looking forward to winter. My Raynauds is very reactive to my general body temp – is your’s like that.

Cheers Wayne

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[quilter]

😉 That’s very strange that you have raynauds attacks at predictable times!!! I want to share with you that my raynauds is gone? I had a severe case. The only thing I could do for it was drink hot tea. I believe that daily massage has sent it away. Here’s what I do: I soak my hands in hot water for about one minute (I even stretch my fingers while they are soaking), then I massage them with a small mixture of Bag Balm and Tiger Balm for about 15 minutes. I do this in the evening before I go to bed so that it works all night. I believe that the Bag Balm works because it has quinine in it. I hope this helps you! quilter

Dancing feet are Happy feet!
Nov 2007 Raynauds, Jan 2008 Carpal tunnel, Aug 2008 Rotator cuff, May 2008 MCTD, July 2013 H.Pylori, Aug 2015 Vaginal Atrophy
Medications: Minocycline 100 mg MWF, Low Dose Naltrexone 4.5mg, Acidophilus 1-3 a day, Estradiol patch
Vitamins etc.: Vitamin A, Vitamin E, Vitamin D-3 1000 IU a day, Aspirin 325 mg, Magnesium, B6, B12, Beta-carotene, Cranberry, Garlic, Multi Vitamin, and Glucosamine & Chondroitin with Boswellia & Manganese, & MSN, Grape Seed Complex, Meta

[JeffN]

I have found that if my hands get really cold any time of day I will suffer an attack. Mostly in the colder months, I don’t seem to have much problem in the summer, only when I swim usually. Anyway I do notice that like Wayne I have problems in the winter when I first go outside in the morning to go to work. Even before my hands have time to get cold my hands seize. I don’t notice an increased problem at any other time of day but the moring thing is noticable and predictable. Kind of curious. I have also noticed that I have not had as much problem with the Raynaud’s this winter so I think that my Raynaud’s problem may be improving.

[mlouise]

Thanks to everyone for your responses. It is nice to hear other folks results and to see so many of you getting better. I gives me hope. Great news JeffN and Quilter on your Raynauds victory. One more thing down!

Dear Maz, Yes I am on Nature-throid and Iodoral for thyroid. I did not have any unusual results from blood work, but my doc took my temperature and said, “Low thyroid”. He did this in December and yesterday my temperature had come up from 96.7 to 97.5. Dr. B says that this is good.

JeffN and Wayne: Dr. B did say that there is definitely a relationship between low body temp and when the Raynauds attacks. He thinks it is related to thyroid. I also explained to him that when I get in the sauna at 134-136 degrees, it takes me up to 22 minutes before I get one drop of sweat. Doc says this is all related to body temperature and hormone imbalance. I guess it is all thyroid related, yet I do not have any unusal blood test results, Go figure?

Quilter: Thanks for the massage recommendation. As it so happens we have udder balm handy. We have always milked a cow or two and the udder balm works great on the cows when they get chapped from the cold and wet. I will give it a try. Incidentally, my huband is doing all the milking these days. Until I can get my hands working again, I can’t get my fingers around a cow’s teet.

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