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.

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.

Q: What does a Lymphedema Doctor or Therapist do?

I get asked this question a lot. Probably because no one really knows what lymphedema is, sometimes, not even a primary care physician. Here are the basics of what a lymphedema specialist will do.

A: A Lymphedema Doctor is someone who specializes in the treatment, therapy and prevention of lymphedema.

Your doctor will ask you whether you have had any surgery, radiation treatments, or infections in the affected area. He/she may ask if you have ever had a blood clot. If a child has lymphedema, the doctor will ask if anyone in your family had leg swelling starting at a young age. This may indicate an inherited disorder.

Your doctor will examine the swollen area and press on the affected skin to look for a fingertip indentation (pitting). He/she may measure the circumference of the affected arm or leg to determine how swollen it is compared to the other one. The doctor will look for signs of infection, including fever, redness, warmth and tenderness.

Usually, no specific testing is necessary to diagnose lymphedema. But tests may be ordered if there is no obvious cause for your condition:

• A blood count can look for a high level of white cells, which means you might have an infection.
• An ultrasound can look for blood clots, which can cause an arm or leg to swell.
• A computed tomography (CT) scan looks for a mass or tumor that could be blocking lymph vessels in the swollen arm or leg.
• Lymphoscintigraphy procedure where radioactive dye is injected into the swollen limb. The substance then travels and is tracked until it reaches the lymphatic obstruction.

Once Lymphedema is diagnosed, your doctor may want to preform Complex Lymphedema Therapy (CLT).

Complex Lymphedema Therapy consists of the following lymphedema treatments:

• Lymphatic drainage
• Compression bandaging
• Skin care
• Patient-specific lymphedema physical therapy exercises
• Exercise for lymphedema is also emerging as an important component of lymphedema treatment.

Follow-up appointments are necessary to keep an eye on the condition. for the first year after treatment, your doctor may schedule appointments every 3 months. After that the appointments will be scheduled every 6 months. Always contact your doctor if you see any changes or are concerned about anything, don’t wait till your next appointment to speak up.