When i have flairs or can't take my meds for a bit, i get this....
I not only get hot and sweat, but then i get cold and freeze. My temp changes i go from hot to cold horribly as you do if you have a flu. I get the shakes etc.
Anyone else get not just hot but cold and hot?
I definitely felt that way. When I was at my worst, I would go to bed freezing and wake up sweating. I always had no temperature guage compared to normal people. Just all over the place.Way back during my first few months of having RA this happened to me. But from what I can remember, it was more of the freezing cold and shivering that was going on. Seemed like the more I shivered, the stiffer I got.
I don't remember in the beginning. Now, I just always seem to be hot, even when everyone else around me is freezing.
But since it is so often compared to having the flu constantly, that would seem to be part of it.
I usually am cold. When I first started symptoms I was going through menopause at the same time so it was really hard to tell how much was the RA and how much just hormonal fluctuations. I do get low grade fevers often.I also have problems with either being hot or cold. I can't stand the hot weather or the cold weather. Leaves ne in a pretty bad place. LOL I always thought it was due to my Hypothyroidism.
TrishaI'm with you frozen people. Very rarely get hot. I do however get nightsweats, everynight, doesn't matter what I wear to bed or if it's 80 or 30 degrees . It's so gross!glad to see I'm not really crazy as I thought! I go to bed, no matter what the temp is and just freeze!! tons of blankets, sometimes even the electric blanket on, then I wake up in the middle of the night just hotter than I can be!! It's soooooooooo weird!!
yes! it's very annoying & i kinda freak out when it happens. when i get flare up's i get really cold really fast. as a creature of habit, i rush under the covers, but it doesn't help. i usually stay freezing cold for 15-20 min's. but i have a tendency to get upset & freak out, which makes it worse. if i force myself to calm down by breathing slow & deep while laying there trying to warm up, i get warmer faster than if i continued to be upset. but then i'm suddenly hot & kick the blankets off me. another thing that helps is running my hands under warm water. that seems to regulate my overall body temp. I get the same thing cold then hot and I shake alot when im in alot of pain. Guess I am not as crazy as I thought I was. Do you any other sensations? As in does it feel more like muscles, nerves or joints? Do your legs spasm or shake or is it just centered in the knees? Do you feel like you might fall or are unbalanced? Or is it more of a prickly feeling? The fatigue sounds very familar. I often feel that way. You say that your undiagnosed for 7 years. Have you been seen my both a Rheumotologist and a Neurologist? What kind of tests have they done? When I'm flaring (lately all the time) I'm cold. Sometimes I can't get warm no matter what I do. It passes within a few days. All I can do is laugh because I'm usually too warm. In answer to the knee weakness. Yes, I have leg and knee weakness and for me it's just part of the RA and PA. I have to sit down or lay down for awhile.Hi Deanna,
Kim, Have they also tested you for Lupus which has little joint damage. Also, some people just progress much slower and don't have it show in their blood work. Have you ever got a second opinion on all this? Also, with your knees, have they ever done a MRI? Some damage does not show up on an xray but will be very clear on a MRI. You are on a very low dosage of MTX which is strange if they have tried humira and are starting Enbrel. I'm on 3x that and some are higher. But there's only one person I've heard of lower than that. If you are not able to work now and it has been going on this long, then your RA doc is probably not being aggressive enough. Burning and weakness might be joint inflammation or damage. That's why I was asking about whether you had MRIs done. My first xrays showed nothing, but I wasn't able to walk on one of my feet so they sent me to a neurologist and also got the MRI. I passed the neurologist just fine, but the MRI picked up that I had no cartiledge in my knees. Same kind of thing with my shoulder. The xrays didn't show the damage, but the MRI did. In the past, the doctors went with xrays first. But more and more, they are going straight to MRIs. The burning and weakness sounds like your muscles in knees are weakened either by the illness or damage. Talk to your doctor about whether physical therapy might help. Why didn't they send you to a Pulmanologist if they suspect lung involvement? They did that with me. RA can affect all your systems and lungs are one that they really need to check. Ask your RA doc about that one. If they get the illness under control, your pain should decrease significantly. However, you will probably always have pain to some degree. But not near as bad as it is now. Xrays of your lungs is not sufficient for evaluation. They need to do a Pulmonary Function Test and spirometric. Some Pulmonologists do this in their office. As long as you feel like this disease is not under control, keep pushing the doctors. If you have lung involvement, any chance of it, it must be evaluated by a Pulmonologist. RA can cause scarring in your lungs and other problems like blood clots. While I didn't have any of those complications, I am very glad I got the tests done. I've been through that three times now. So, I am pretty cautious. Just keep trying.
Here's my new thing....at night or when you're really tired, has anyone had a sort of fuzzy weak feeling in their knees? I feel like it's my bodies way of saying, sit the hell down...it's happened 3 times, but as you all know, once it starts...
it's a burning feeling and weakness in the muscles around the knees..I've had just a million blood tests and xrays. I'm sero-negative and have no damage showing up on xrays yet, although last week my doc said the swelling in my fingers was "very bad" and then, not 10 minutes later said that the pain I describe and the lab tests don't match. I told him I couldn't even do my job properly (I'm an esthetician and have to do full leg waxing from time to time) I avoid it at all times. I'm in a really bad phase now and am not working at all, just sleeping and complaining, haha..I take 3 mtx once a week and in 2 weeks start Enbrel and Lodine...my RA laughed at Humira....funny how we all have some little weird thing we think only we have. and now I see I'm not alone!!! yeayyyyy....but still sorry we all have the commonality...thank you
I'm down to 3 mtx.. from 8, to 7, to 6 etc..my liver enzymes are up with anything else...I did humira for 7 months and then last month quit everything because I was so disheartened that nothing helped. I did go for a second opinion and when I mentioned the muscle weakness, the new Doc said I needed an xray because I maybe I had lung disease. He wanted to give me a whole slew of new medications to try to help my RA. It was a gut instinct, but I felt like he wasn't getting it at all. The xrays were normal, regular ol lungs. My Old RA(who I saw 1 week later) said that this is not the sort of illness I can just ignore and power through. So, he agreed to let me take the smallest dose of mtx and in 2 weeks, I'll start my Enbrel and Lodine for the inflammation. I'm going to Hawaii next week and really want to have some pina colada's! I have been tested for Lupus and seems like everything else. I think that I could handle all of this so much better if I felt like the doc could understand me better when I tell him that yes, my labs seem good....but my pain is worse. Do you know if the pain will stop or lessen if we get the disease under control?
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