Hot & Humid = Hot & Swollen

OK, for everyone that has lymphedema in a humid climate, I feel your pain and discomfort. I'm in NY and the weather, although nice, has been somewhat humid. Trying to keep my garments on all day is a challenge. Not only do I get super hot with them on, my legs get so swollen and feel so constricted as well. This is only the beginning. It's not even summer yet.

I try to wear skirts in the warm weather because wearing jeans over my garments is a nightmare when it's humid. At least with a skirt I get some kind of relief (even if it's not a lot). I like to wear long skirts because I'm tired of the granny colored garments and explaining to people why I'm wearing "winter stockings" in the summer. Last year I found a summer strapless dress in Target that I wear as a skirt. It works well. This year I found a similar skirt (an actual skirt this time) in a different color at Kohl's. It's hard to find long summer skirts though. I think I need to start making my own.

Looking for a New Doctor

I have to look for a Dr that can diagnose & treat Fibromyalgia. My primary Dr thinks that's what I have since all my test results (besides the nerve test) came back normal. He did recommend a Dr but he doesn't take my insurance. So the quest begins.

I have to mention that along with the headaches, neck pain, arm pain, and leg pain, I get huge knots in my leg muscles. Especially at night, which makes it very difficult to sleep. Sometimes, like last night, I hardly sleep at all and all I can do is toss and turn. I think about getting out of bed, but what would I do? It's the middle of the night and I can't make too much noise because my husband is sleeping. Plus, I'm tired. I don't want to get out of bed, I want to sleep. It's so frustrating.

Now I'm wondering if all the pain in my legs, when they're not swollen,  has been from fibromyalgia all along and not caused by my lymphedema. I guess it's something to ask this new Dr when I find one. I just hope I can find someone who knows something about lymphedema also. I hate always having to explain it to Drs.

Fibromyalgia

The Arterial Ultrasound came back normal. They checked to make sure my blood was flowing correctly through my legs. The Nerve Conduction results were abnormal on my right leg. The Dr thinks it might have to do with the lymphedema.

I have been doing a lot of research on all my symptoms and medical issues and came up with an answer: Fibromyalgia. My Dr agrees. He's running one more test and then he'll recommend a Dr he knows who deals with fibromyalgia. Just one more thing to add to my list, but fibromyalgia can be the route cause of some of my problems.

Defining Fibromyalgia:  (taken from the National Fibromyalgia Association website)
Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.


Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.


Symptoms I am feeling:

1. Leg Pain
2. Hip Pain
3. Arm Pain
4. Headaches
5. Neck Pain
6. Problems Sleeping

Symptoms that I have had for a while that can be part of Fibromyalgia:

1. Memory Problems
2. IBS
3. TMJ
4. Raynaud's

Reading about what other people go through who have fibromyalgia is concerning. If I do have it, I hope it never gets worse. I'm out on medical leave now because I can't sit for more than 10 minutes without being in a lot of pain. It's debilitating at times. This along with lymphedema and all my other problems is really depressing. I'm trying my hardest to keep an eye out for the light at the end of my tunnel. There is always hope for a better day.

Abnormal Results

OK, no blood clots, all blood work came back normal. Now I'm getting other tests done.

Did not check with my lymphedema Dr if it was OK to do this test, but last night I had a Nerve Conduction Velocity Test done on my legs. I had it done on my hands/arms before and it was painful, but on the legs…oh my God, I wanted to die. The pain was horrible. Every time the guy shocked me I wanted to scream.

As I was writing this, I got a call from the Dr with my results - Abnormal. Yay for something coming back abnormal! Now they know I'm not making this up!! They said if I'm no longer in pain then I don't have to come in for a follow-up. I'm still in pain. So I go back in tomorrow for an Arterial Ultrasound on my legs and at that point I'll discuss these results and keep all of you posted.