Hi friends,
I could use your help figuring out what’s gong on. I took Humira on Friday night as usual and didn’t sleep Saturday night or last night. I’ve had periods like this before when I have a hard time sleeping as I feel compelled to move instead of relax (no matter how tired I am). It’s a deeling of intense agitation. Same thing again this time with the added benefit of feeling cold to my bones. This feeling of cold doesn’t go away despite wearing multiple layers in bed with a heating pad and the furnace keeping the house toasty warm.
I have slightly low thyroid function, am taking 5mg prednisone daily and have pretty dry eyes at the moment (contact lenses feel scratchy even when I first put them in). Oh, and despite being cold I’m also capable of sweating profusely at the same time. Getting in the hot tub is helpful in that I get warmer but my toes sting and burn when I first get in. I’ve not had any discoloration of toes and fingers so I don’t think it is Raynaud’s (although my extremities feel very cold).
Spoke to the rheumy this morning. He’s sure the prednisone dose is too low to be the culprit. So, what do you think–thyroid issues? Menopause maybe? Something else altogether? Suggestions please.
Thanks, Sybil. This is actually really helpful. I htink my hormone levels are OK but I'm 6 years post-hysterectomy and I'll be lucky if my ovaries last another year so your hypothesis about estrogen might be on target. The feeling of cold is such a pain in the arse. And it keeps me awake which makes me feel terrible and on and on. Waiting for a call back from the doctor.
sybil said:
I sympathise - poor temperature control isn't agony but it is irritating and debilitating. Oh, and I can relate to agitation too & poor sleep alongside feeling cold - they all do seem to coincide
I'm also having issues with cold feet, legs and hands. The past few months this has been worse then ever and the guys in the house are heading to bed early every night as I have the wood stove blasting continuously. Thanks for sharing, will make a point of talking to my doctor about this during my next visit.
Well, I must be going through "man"-opause then. I have been having this for quite a long time. I can even have a weird split issue. One half of body is cold while the other half is warm and can even have a bit of sweating. My wife has witnessed this. Asked my doc and he didn't say much. I notice the cold issue more a few days after a Remicade infusion. 30 days of below zero weather certainly isn't helping. Bring on the global warming!!!
I would guess there are a couple of things going on Jane. I think the decreasing estrogen, and perhaps thyroid, are making you feel so cold and giving you insomnia but I think the steroid is giving you the agitated feeling. I went through something similar with menopause. We don't really know how much hormones affect us until they are gone! I don't tolerate steroids very well due to the agitation/anxiety. I hope you and your doctors figure it out soon. It is no fun. I will keep you in my thoughts and prayers in the mean time. <3
When I'm in a flare or just a period when my disease is out of control (like now), I get the bone deep chill which alternates with sweaty and hot . It's about 70 / 30 cold to hot ratio. Nothing warms me up, as it feels like my core temp has dropped, rather than the chill coming from the outside. That's why it seems no blankets or warm clothes seem to help. When I finally do get warm, I'll suddenly flip over into too hot and sweating, then switch back being cold. Not fun!
THANKS! i appreciate you all responding if only because it helps me to know I'm not losing my marbles. But I'm sorry that you have experienced all this bone chill. I'm hoping that a handful of benadryl will allow me to sleep tonight.I can handle this cold when i"m distracted (like in the daytime) but in the depths of the night this is a tough way to be. Very lonely and a little scary.
Sorry to hear you're going through this - it's definitely not any fun! I have that restless feeling - kind of like restless legs but full body. For me, taking magnesium and melatonin before bed helps a great deal.
I managed to get to sleep around 3am. So I got about 4 1/2 hrs. Not bad. I woke up feeling much less cold and a little less frantic. I'm wondering if the thyroid issue is a red herring. And I've taken prednisone on and off for 18 months so I can't attribute this to the steroids. Perhaps this is related to Humira?
Like I said, I've had similar bouts of sleeplessness/restlessness before and they have started after my shot. So perhaps the Humira is the culprit and in those first few days after the shot my body is simply in turmoil. Anyway, I have a short (yes, we'll squeeze you in if you would please stop crying) visit with the rheumatologist on Friday and my regular appointment with him is on Thursday next week. So, I'm hopeful tomorrow we can talk sleep and next week long term solutions (like please can I get off the prednisone).
Thanks to all of you who wrote expressing your concern. Your words of encouragement are always enough to help assuage my fears and reset my whirling brain. Cheers! Jane
I managed to get to sleep around 3am. So I got about 4 1/2 hrs. Not bad. I woke up feeling much less cold and a little less frantic. I'm wondering if the thyroid issue is a red herring. And I've taken prednisone on and off for 18 months so I can't attribute this to the steroids. Perhaps this is related to Humira?
Like I said, I've had similar bouts of sleeplessness/restlessness before and they have started after my shot. So perhaps the Humira is the culprit and in those first few days after the shot my body is simply in turmoil. Anyway, I have a short (yes, we'll squeeze you in if you would please stop crying) visit with the rheumatologist on Friday and my regular appointment with him is on Thursday next week. So, I'm hopeful tomorrow we can talk sleep and next week long term solutions (like please can I get off the prednisone).
Thanks to all of you who wrote expressing your concern. Your words of encouragement are always enough to help assuage my fears and reset my whirling brain. Cheers! Jane