Pregnant with Lymphedema

I'm pregnant! Yay!! I'm at the end of my first trimester and have had no serious issues with my legs as of yet, but being pregnant does not make the lymphedema better. In fact, it can make it worse. Legs will swell with pregnancy alone, but add lymphedema to the mix and watch out! I try to wear my garments, those tight, very tight, compression garments that will help with the swelling. I try to wear them on a regular basis, but sometimes it is hard to put them on. If I'm not feeling well, the thought of struggling to put them on is not something I want to think about. With that said, I barely wore them in this first trimester. I was having all day morning sickness and couldn't really leave the couch because of it. At least I had my legs up all day, which helps slightly. When I did get them on, my legs felt good, that is until mid-day when my legs felt so restricted because of the swelling and I wanted to chop them off.

I've done some research about those women out there who have lymphedema and are or were pregnant. Not much to be found, just little things that don't really give too much information. There is this one article on the website LymphNotes that explains a little bit of what needs to be done when you are pregnant and have lymphedema. Click here to read the article. For the most part, I should be wearing my compression garments everyday, keeping my weight under control (don't gain over the recommended amount) throughout the pregnancy, and doing manual lymph drainage everyday. Duh. Things I already knew.

Now, since lymphedema is a hereditary disease, will I pass this on to our baby? I have done some research on this as well. What I've found was that I have a 50% chance of passing this gene on to our child. Hopefully lymphedema stops with me, but anything is possible. I've read a lot of stories of women with primary lymphedema who have children and none of them have developed it. So there is hope for our little one.

Why are there no lymphedema movie stars?

Come on people. Get mad. Do all the women in Hollywood have to have great legs? For once I'd like to see a woman in the spotlight with a great upper body and lymphedema in the legs. Who's gonna represent us here who have struggled with feeling alone in our swelling and big legs?

OK, that's my ranting for the day.

It's Official

Yup, just one more thing to add to my long list of medical problems. I have just been diagnosed with fibromyalgia. Lucky me.

Q: What type of exercises can you do with Lymphedema?

I was asked this question and have to say that exercises will be different for every individual with lymphedema. You have to know your limits. Basically low impact exercises are best and all exercises should be done wearing your compression garments.

Hey, summers coming! Remember there is one fun and enjoyable activity for all and is especially good for people with lymphedema…

SWIMMING

***I have taken the below information form my own lymphedema doctor’s website www.lymphedema-therapy.com. Here is the link if you want to read the whole thing: Lymphedema and Exercises.

Certain types of exercise are considered higher risk

Of course, certain types of exercise are considered higher risk than others for individuals with lymphedema. For example, high speed activities like tennis, bowling and racquetball, place more stress on the upper limb while jogging, stair-climbing machines, downhill skiing, water skiing, football, soccer place more stress on the lower extremities or have higher injury risk than other activities such as swimming, brisk walking, and cycling. That is not to say that someone with lymphedema of the leg should not jog for exercise, or that the person with lymphedema of the arm and hand should not play tennis or golf.

Things to consider regarding lymphedema and exercise

• Many men and women with lymphedema or a limb at risk want to work out with weights. A slow progression of light weights can be done safely and can allow an individual to develop good strength and power in any muscle group.
• The important thing to consider is whether you feel good after the exercise and how your affected limb reacts after you exercise.
• You must also consider your level of daily activity and modify accordingly – if you have had a particularly difficult day and your affected limb is more swollen, you may choose to do a different activity i.e. swim instead of walk, or you may realize that the best activity for that day is to rest with your limb elevated.
• The importance of deep abdominal breathing exercise should not be overlooked. Deep breathing enhances the pumping in the thoracic duct (the major lymphatic vessel draining the lower body and the left upper trunk/arm/hand).

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.