Has Anyone Ever Had this Symptom?

[Luke and Margaret]

Hi everybody
Luke is back in the hospital. A flu bug has set off another round of odd symptoms. The on that is really puzzling me seems to have to do with circulation. There have been a couple of times when he gets the “shakes” very badly, and cannot get warm. His extremities get very cold, and I have to massage them to get any circulation going at all.

Yesterday any time they tried to get blood out of his right arm the needle hurt like hell, and no blood would flow. That arm also shakes sometimes, involuntarily. The right arm is fine.

Luke is such a mess of diagnosis and symptoms that this could be nothing or associated with his heart problem, but I wondered if anyone had ever run into this as part of their CMML, or even AML.

We’ll ask for a bone marrow today, to see what stage we are at.
Margaret

[Bec]

Hey Margaret,

I do not remember Dad ever having shakes but he did have to put port in chest because his good veins became scarce. My Dad has problems with night sweats that requires him to change clothes two or three times a night. This disease does weird things to all.

Make sure they are cleaning iv sites well before “sticks”. We have to insist on this at every hospital visit.

My prayers will be with you.
Bec

[Ensnee]

Margaret, what bad news to hear that Luke is back in hospital. Which hospital is he in?

Hans has never had the shakes or poor circulation with either CMML of AML. His wierd symptom when he starts going downhill is when he
eats certain things he has a bout of vomiting & diarrhea several hours later. He was tested to see if he had an intestinal parasite, but that was negative. Since he started his first chemo last April he hasn’t had that symptom again, until a couple of weeks ago.

Please give Luke my sincere best wishes that he’s feeling better and is home soon. Many hugs to you both-

Esme

[lindajo]

I have never had the problem of not getting blood from a vein, but the shakes, cold extremities and the involuntarry muscle reaction in the arm happens to me all the time. Normally just my right arm.

I have had this disease 15 years and I have not been able to predict when these symptoms will hit. It seemed like they were less severe and frequent when I was on nutritional supplements.

[riley]

Hi Margaret,

My father had something that sounds similar when he was first diagnosed with MDS. Tremors in his neck, face and arms were one of the first indicators we had that something was wrong. When he’d get tremors, he’d get really cold, but all over, and not just in his extremities. A blanket warmed straight out of the dryer sometimes helped with the tremors.

At times, his tremors went on for hours, and there was a medicine they gave to get it to stop. It was an injection that stopped the shaking within minutes. I can’t recall the name of it right now, but if I can find it, I’ll let you know.

Occasionally, they also couldn’t draw labs because they couldn’t get any blood. It sometimes helped for my father to cough or reposition his arm — if he was lying down, often raising his arm on his pillow above his head helped.

Bec mentioned night sweats. My father had those too when he was first sick with MDS, many times a night, which kept him from ever getting any good solid sleep. The doctors had no answers for how to get night sweats to stop. My sister-in-law and I bought Dad “wicking” clothing at REI…he never had another night sweat. If any of you are having a hard time with night sweats, try wicking clothes or pajamas and see if they help.

Nicole

[Sandy L]

Hi Margaret

I have no experience to offer you. I hope that Luke gets better soon and that someone else from the forum can give you the advice you need.

[Luke and Margaret]

You guys are amazing. I’ve printed this off, will take the information back to the hospital tomorrow. At the very least it will comfort Luke.

Just one confusion …. what is a “wicking” pj, and how do I find them?
M

[dusty]

Hi Margaret:
Betty was having lots of shakes, especially in her hands and arms. Last week she went off her pain meds (Oxycontin amd Oxycodone,) and is now on Morphine. The shakes and tremors are barely noticable. Other causes for the shakes might be poor oxygenation, low Hgb. Our nurses will often put warm towels on her arms to help with blood draws. He almost sounds hypothermic where the body will pull the blood away from the extremities to keep the body core oxygenated.
Good Luck
Don

[riley]

Hi Margaret,

Wicking fabric wicks moisture away from the body, so you’ll find a lot of outdoor clothes made in these fabrics…like hiking t-shirts, pants and socks.

We bought all of my father’s clothes at REI. It’s an outdoor gear store here in the US. I don’t know if you can find them in Toronto, but if not, look at whatever local camping/hiking/outdoor sports store you have. I would think that if you go to any hiking store and ask for their moisture-wicking clothing, they should be able to point you toward it.

Another option would be to order online. I believe L.L. Bean will ship to Canada, so here is a link to a wicking t-shirt from L.L. Bean:

http://www.llbean.com/webapp/wcs/stores/…f eat=ssdpb9541

And here are wicking pants that zip off into shorts:

http://www.llbean.com/webapp/wcs/stores/…=Search&feat=sr

As my father was losing energy and was sleeping more during the day too, he started wearing these t-shirts and shorts all the time. That way, if he napped during the day, he still didn’t deal with night sweats.

wickers.com is another site that sells wicking clothes and underwear. If you google “wicking sleepwear” you can probably find many others. I think there are also wicking bed linens, though we didn’t find that necessary.

I hope Luke is feeling better soon.

Nicole

[riley]

Margaret,

I just found my notes about my father’s tremors. The doctors called it “rigors” and they were giving him Demerol if the shaking went on long enough to cause my father to ask for meds.

Nicole

[Luke and Margaret]

Hi Dusty
Your post explains something I’ve been seeing – Luke’s hands sometimes go very white. I’ve never connected it to the shakes. His hemoglobin is hovering at 98 or 99. Not the lowest he’s been, but certainly low enough for him to start looking symptomatic. I’ll need to ask his oncologist about this. Movement helps; the more he lies in bed the more these issues come up.
M

[Bec]

Dear Margaret,

Thank you so much for info on “wicking” clothing. I just bought my son a long sleeve shirt from Walmart for football. I am going today to buy my Dad a short sleeve shirt. Bass Pro shop also has a few shirts and I found a bunch of lines on the internet.

My Dad has had this problem on and off for years. It it exciting to think you may have helped find a solution.

Thanks again. I’ll update you on how it works.

Hope you Dad gets rid of his “shakes” problem.
You are in my prayers.
Bec

[Author]

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