hi everyone, I have a new question. My husband, who was diagnosed with Rheumatoid Arthritis (RA) last fall and LGL Leukemia last winter, was feeling much, much better this summer. His remaining symptoms seemed to be due more to the cocktail of drugs he takes than the diseases themselves. But in the last month, he's been getting more aches and pains, injuries that seem to be unjustified, maybe even more tired despite not having changed his meds in months. His stress and exercise levels also seem about the same, but it's been much colder here lately, and we're wondering if there's a seasonal effect. Have any of you noticed that certain types of weather bring out particular symptoms? I know that arthritis has a reputation as getting worse related to rainy weather, but haven't really heard any connection about temperature. -Deirdre

Hi Deirdre, I always feel best in the spring and early summer. I battle allergies and infections in the fall and winter. Have barely been out of bed for days. Don't have RA but other autoimmune issues. Vitamin D has been a hot topic on the Yahoo LGL messageboard lately. Many need supplements of D and it would make sense more so this time of year. Have your husband's D tested and maybe magnesium too. Low Mag can cause aches and pains also. Got a pool for the summer, wish I had a hot tub for the winter.

One problem I deal with in cold weather is Cold Aglutination - where the blood literally begins to gel up. This increases the anemia issue and causes more joint and muscle pain. And INCREDIBLE sleepiness! I sleep 10 hours and wake up sleepy. I have to fight to stay awake all day. This was just a progression of the disease.

Thanks Ducky, I did not know that. That explains alot. Wonder if that is what makes my palms and my feet red. Most allways on my palms and I notice it more on my feet when in cold water. Interesting.

Winter seems to have increased my aches and pains for me. My doctor said it was quite common for people with RA, let alone RA and LGL. He told me to keep my hands and feet warm at all times and avoid contact with outside weather.

my Dr had me on 50,000 Vit D for 8 weeks then 2000 daily... but i flaked out and didn't keep up with it sooooooo i am back on 50,000 units for 8 weeks i noticed a huge difference with aches... and mood :)

Now that sping has come and gone and summer is almost over I have to agree that I feel much better during these 2 seasons than winter. However the fatigue is pretty much the same along with feeling ill especially after I've overdone it. I posted on another thread that Dr. Loughran didn't think the fatigue I'm experiencing was from the LGL since I'm not anemic, My neutrophils are 630. No fevers, infections or mouth ulcers. Does anyone else have severe fatigue without anemia? It's much worse than the fatigue I ever experienced from fibromyalgia. Definitely not looking froward to winter. Wish I could hibernate like the bears do. Also felt pretty bad for a few hours before hurricane Irene hit PA. Hope everyone in Irene's path made it through ok

YES to fatigue. Yes to feeling absolutely worn out after exertion. I do have anemia, but it is stable now at about 10.2 -10.5, so I know I have adapted to those levels. It has something to do with the exertion that makes me afraid to 'over do it' with any activity. Every once in a while I become convinced that it is in my head and I do something out of the ordinary, or do two or three normal things in a row without resting, and I pay with feeling extra extra worn out, and my cycle of limiting activity starts again. I am becoming more convinced that it is the disease and that it is associated with exertion. I just wish we could figure out why. My answer to the problem is taking Prednisone for the major events in my life, with my doctors approval, once or maybe twice a year.

I, too, suffer from severe fatigue without anemia. It is not every day but when it happens I get up, have coffee, read paper and then find myself having to go back to bed for the whole day - no tv - no reading. This also happens the day after I go out shopping or do something else exertive. I now find myself dx with Sjogren's Syndrome. I am miserable with the dry mouth and eyes (especially at night) and wake up several times. Has anyone else had this dx? My body is really starting to fail me. I'm good with treating symptoms as long as my quality of life stays okay. This is really starting to get me down. Also have started having headaches in my temples and low platelets. Headaches are unusual for me.

Thanks Susi & Skiing for replying. It's very helpful to know someone else has similar symptoms although I wish you didn't have to suffer them also. I was tested for Sjogrens but it was negative. I forgot to mention a few things in my last post. I had low vit.D levels and am taking liquid D drops. The levels are improving. It may be why my muscles are feeling slightly better or maybe it's just that spring & summer are better months for me. The test will be when winter comes. The other thing was when I was on 80 mg. of prednisone surprisingly I did not have more energy from it. Everyone was telling me that I'd have tons of energy but sadly that didn't happen, The prednisone did cause my potassium levels to drop which caused my heart to do some big flip flops. But really, all those things seem so minor when I read about the serious things so many have with LGL. Like you said Susi I I too start to think it's in my head somehow and I just need to suck it up and get stuff done and of course I pay for the exertion in a huge way. Sometimes it gets so bad I have to sit without moving so some life can come back into me, I have to say I've had fatigue from fibromyalgia for 20 years but this fatigue feels like it is literally sucking the life out of me. Sorry this is so long but somehow it feels a little better to be able relate how I feel to others who really understand not just the physical part of it but the mental distress it can cause as well. But for now I'm going to have some organic dark chocolate, coconut milk ice cream and then snuggle with my kitties. Life is good after all !!!!

Hey there - I am in nursing school and we were learning about sickle cell syndrome where the patients have terrible joint pain and I thought about the joint pain I experienced while my LGL was acting up. I am sure those oversized cells have something to do with it. But the test will be this winter to see if I have the same kind of joint pain now that my counts have almost normalized. Is joint pain pretty common with everyone who is symptomatic?

The granulocytes found in us LGL patients aren't -that- big and they don't stack/agglutinate in capillaries like sickle cells do. Joint pain associated with LGL is RA, and that is an immune response... but I digress!! I DO have a seasonality to my RA, and it is mainly associated with cold exposure. Any temperature below 40 degrees is enough to trigger a flareup in my hands unless I wear a nice, warm pair of gloves. I turn into a couch potato in the winter since my joints are so bad... but once spring comes, I bike, swim and hike to stay healthy.

Curious, I was tested for the RA factor and it came back negative - yet I too have the terrible joint pain in cold weather - have ya'll been tested for RA?

I've seen lots of people here (and in real life with other autoimmune type disorders) complain of joint pain despite having a negative diagnosis of RA. LGL definitely seems to be related to autoimmune disorders, and several different autoimmune disorders have some of the symptoms of RA.

I am also RA factor negative, but I test positive for CRP as well as CCP, which are other tests for RA. I do have aggressive RA, and has been diagnosed. I haven't looked into that too much, and I get conflicting opinions between my two doctors. My Rheumatologist says the RA is caused by the LGL, and believes that is the reason why I am RA factor negative... but my hematologist is certain "beyond any shadow of a doubt" that LGL is a runaway immune response as a RESULT of having RA.

I too get severe fatigue and not anemic. I've been active my whole life, skiing, mountain climbing, cycling, but I will have days were I go back to bed after getting up in the morning, It seems to cycle. I was recently on Cytoxan for 6 months, along with Cyclosporine. Since going off the Cytoxan (Cyclophosphamide) my neutrophils have started to go up and down, we think this may are cyclical and the way it just is- to get a better understanding, I just started to go in to my oncologist for blood labs when I feel really tired, a paradox since I don't feel like driving, but we are going to map it out. I am still on Cyclosporine, 200 mg/day. Elizabeth