Fibromyalgia, Lymphedema and Loneliness

My legs are swollen slightly larger than the one on the right.

 I think I've mentioned before that this summer's heat has been really hard on me. I was recently diagnosed with Lymphedema and it has been "introducing" itself to me. My legs and especially my ankles are so swollen that I can barely walk. I'm afraid that they are going to start weeping any time.  The first time they weeped it scared me but I've gotten use to it.  When they would swell so badly in the past, I would often think that it would make them feel so much better if I could just stick a pin in them and relieve the pressure.  I was right, it does take some of the pressure off but too much of a "good thing" can be scary.  Mother's Day I was sewing and felt wet floor under my feet.  It took me a minute to figure out what was going on.  In the mean time a puddle had formed under both feet on my chair mat.  Had a measuring cup been handy, I feel sure I could have captured enough to  measure. 

My doctor has not yet addressed the weeping but I am concerned because everything I've read warns against having any kind of opening in the skin. I looked up Lymphedema on the Mayo Clinic site and this is what it said:

 The reddened skin or rash on both legs (that's me) may signal a deeper, more serious infection of the inner layers of skin. Once below your skin, the bacteria can spread rapidly, entering your lymph nodes and your bloodstream and spreading throughout your body. Recurrent episodes of cellulitis may actually damage the lymphatic drainage system and cause chronic swelling of the affected extremity.  In rare cases, the infection can spread to the deep layer of tissue called the fascial lining. Flesh-eating strep, also called necrotizing fasciitis, is an example of a deep-layer infection. It represents an extreme emergency. 

Isn't that just lovely - NOT!!!! It's hard to rate the pain from the Lymphedema but if I had to assign it a level, I'd pick Level 2.  It doesn't hurt a lot but it is very uncomfortable. If you had asked me 5 years ago if there was a difference between being in pain and being uncomfortable, I'd say there wasn't one.  Where my ankles are so tight from the swelling, I feel like my skin is going to burst open in the creases when I stand up and walk.  My Fibromyalgia pain is a Level 5 right now.  I'm ok but I have to take my breakthrough pain meds.I hate it when I have to do that.

Fibromyalgia causes so much loneliness.  Merriam-Webster defines lonely as being without company (lone), cut off from others (solitary), not frequented by human beings (desolate), sad from being alone (lonesome) and producing a feeling of bleakness or desolation.  Fibromyalgia leaves you feeling all of those things.  Fibromyalgia produces all those feelings.


When you are unable to move around much on your own, you pretty much stay housebound.  It gets the point where you don't want to leave the safety of your home.  I'm home alone five days a week except for the occasional trip to the grocery or drug store.  It's just too hard to get out and go somewhere alone because the pain won't let you have a good time.  

I worry about getting out and becoming too weak due to the pain to make it back home on my own.  My fibro fog makes me be unsure of my ability to make it where I'm going and back home again because I've been out before and not remembered how I got where I was going or how I got back home.  I'm a homebody by nature but this is different.  I can choose to stay home and enjoy it.  I love the amount of sewing, reading and that type thing I get done with it's just me and my sewing machine or me and a book and I enjoy it.  Now, I'm not making that choice and it makes me incredibly lonely.  Its another thing that Fibromyalgia has changed about m y life.

There's another kind of loneliness that comes from your friends (most of whom you discover are more a casual acquaintance  rather than a particularly close friend).  These are the people who prior to your health and your ability to be out and about diminishing, you went to dinner with or "painted the town red".  At first, they still call and invite you like they always have.  As you have to decline their invitations more and more or have to cancel plans at the last minute, their calls become less and less frequent until they stop coming completely.  Your acquaintances don't realize that you do have good days and can get out and have fun.  We may not be able stay out as long as we once did but we would have been out with our friends.  For a short time, we would have been “normal” again. Your real friends, still keep calling, real friends come over and just sit and talk.  Real friends even come over to clean your house and fix dinner for you.

Some don’t understand what Fibromyalgia is and the limits it puts on our bodies. Others do not believe that how bad the pain and fatigue is and call us lazy.  No matter the reason, they don’t know what to say so they treat it like any other uncomfortable situation.  It’s easier for them to avoid the situation than to take the time to learn about our illness.  I prefer to think that most would feel bad if they knew how hurtful their actions were but it’s more likely that they wouldn’t.  This illness weeds out your true friends from acquaintances.

There’s one last group that causes loneliness, emotionally attacks us and treats us as if we are hypochondriacs, lying or are drug seekers.  This group is nothing like the others.  Friends and family can be in this group but most are members of the healthcare profession - the ones that took an oath to do no harm and to work to heal their patients. Often these so called professionals are the most hurtful of all the people we encounter.  There are no tests, scans or x-rays to verify a diagnosis of Fibromyalgia.  Too many healthcare professionals refuse to admit that a condition exists if they can’t find it using technology.  Most are unwilling to accept pressure point testing as verification. I don’t understand why. I believe that a good diagnostician would be able to tell if someone was “faking” it.   Real pain is hard to hide and hard to fake. Many times I’ve told friends and family that I’m fine only to have them tell me I didn’t look fine so tell the truth.  Real pain shows in your eyes and on your face.   Surely doctors are taught how to recognize signs of pain in their patients. 

It’s important to become your own best advocate when dealing with physicians. Not only will it benefit you, it will help other Fibromites (those who suffer from Fibromyalgia) that come after you.  Fibromyalgia is a real disease and the pain is real. Do not settle for a doctor who does not take you and your pain seriously. You deserve to have your pain properly treated.  There are doctors who will believe you so never stop looking until you find a doctor who will work with you and treat your illness correctly and aggressively.  I’ve learned that just because a doctor is a specialist in something that doesn’t seem to be related to Fibromyalgia, he/she can be excellent at managing your Fibromyalgia. My awesome pain management doctor is a psychiatrist who switched to pain management exclusively.  When I was referred to her, I was afraid it was my doctor’s way of telling me he thought I was nuts. The Tramadol he had prescribed was no longer managing my pain even taking double the maximum dosage.  I was so desperate for help with the pain that I went to see her.    If you are able, explore every referral you get.  I know from personal experience that insurance companies have some interesting ideas about how often we should go to the doctor, what tests the doctor should order and what medicines should be prescribed.  I am embarking on an effort to get my insurance to pay for my bandages to treat my Lymphedema.  They pay for the related doctor’s visits, medication and physical therapy.  It makes no sense to not pay for the bandages.  That will be another post soon.  I’ll admit that the odds of them approving the bandages are slim to none but if I don’t push the issue I’ll always wonder if they would have if I asked.