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.

Dr.'s Think They Know Everything

Why is it that when you tell a Dr how you've been feeling they think they know what you are talking about. My Dr kinda looks at me like I'm crazy, then says, "ummmm, does anything else bother you?" Like what I just told him wasn't enough.

I went to my primary Dr today to get a sonogram on my legs to check for blood clots. Trying to figure out what this pain is all about if it's not the lymphedema. The preliminary scan came back normal - no clots. They drew blood and I'll have all the results sometime next week. I know everything will come back normal. It always does. My husband always jokes about anything that is rare or they have no answers for is what I always have. It's sad because it's true. We recently compiled a list of ailments to keep track of all medical conditions and Dr.'s for our own reference. My husband's list was short, like any normal person's list should be. Mine? Well here's my list:

1- Lymphedema

2- Raynaud's in Hands & Feet

3- Chondromalacia

4- TMJ Disorder

5- Degenerative Disc Disease in Neck/Spine

6- Herniated Discs in Neck/Spine

7- Bulging Discs in Neck/Spine

8- Hemangioma in Neck/Spine

9- Straight Neck (no curve)

10- Nodule on Thyroid

11- IBS (Irritable Bowl Syndrome)

12- Eczema

13- Acne

14- Polycystic Ovary Syndrome

15- Had Basal Cell Carcinoma (skin cancer)

Whew! I think that's it.

Pain NOT caused by Lymphedema??

What? This horrible pain I'm in not caused by the one thing that causes all my legs pain-lymphedema? How can that be? My LE doc thinks my lymphedema is under control, which means there shouldn't be anything different with the amount of pain/swelling I always feel. So this pain, which has been consuming me for the past 2 weeks or so has to do with what? OK, so I take fertility meds. It could be from that? Maybe. I'm waiting for my fertility doc to call me back. There is a serious side effect of leg/calf pain and swelling from taking progesterone. Maybe it's that? This is so annoying and frustrating.

I called my HR lady at work and told her what was going on, 'cause, no surprise, I called out again. She's sending me all the paperwork for a medical leave and long term disability. I'll figure out what I'm gonna do once I read through everything. My lymphedema doc won't fill out the medical leave form 'cause she thinks my pain doesn't stem from the lymphedema. So if it is the meds I'm on, maybe my fertility doc will fill it out. And if he doesn't, then I guess I have to go to my primary doc to get all kinds of tests done to see what's causing this terrible pain.

Right now I'm reclining with my legs elevated in hopes that my pain will subside soon. I know that there are many other people in the world that have it worse than me right now and I know I should be thankful I still have the ability to walk and be somewhat functional. But can I tell you a secret? I hate that old cliche: "It could be worse." Well ya know what, it is worse for me right now. Everyone has their own problems and we can always tell everyone with medical issues, hard times, or anything else that's going on with them, that "it can be worse." That's just something to tell people so they can, what? Cheer up? It's a load of bull. My problem is real and I'm facing it right now. Yeah, it can be worse, but right now this is what it is and hopefully it doesn't get worse. Sorry about my ranting. But it's true.

The Dr.'s In

Went to my lymphedema doc today. Told them about the pain I've been having and they think it might be due to some medications I'm on. Unfortunately I have to take the meds so I'm hoping that the pain will subside soon, otherwise I don't know what I'm gonna do.

My legs still hurt, my left one more than the right. It feels like someone used my thigh as a punching bag. Or…you know the feeling when you've done so many squats and your thighs burn? That's how it feels. I saw my HR lady at work today to get new FML forms to fill out. She could tell I was in a lot of pain, which is good, I guess, 'cause then maybe they can tell I'm not making this up. Anyway, got the forms and she asked if a medical leave would be a consideration. I would take a medical leave if it would help, but with lymphedema you could be off your feet for a week and the next time you're on them for even just half a day, you can start to have problems again. Then she asked if medical disability would be an option. I pay for it as part of my benefits from work. I guess it's something to look into. The only thing is that I have to be out of work for 6 months before I would start getting paid. Hmm. What to do?

My husband is very supportive with all that is going on. I love him to death. He even rubs my feet and gives me lymphedema massages when I really hurt. I know he can't possibly understand how this feels, as no one can who doesn't have lymphedema, but he tries so hard to understand. I hope that everyone out there who suffers from this or any other disease has a support system at home. It can feel really lonely at times, but just having someone there who loves you and tries to make you laugh when you're down, is sometimes all you need to get through the day.