Sunday, June 26, 2011

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.


9 comments:

  1. Hi thank you so much reading your story is like you were telling my story word for word.
    Thanks it helps just knowing I'm not nuts. Cheers Clare.

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  2. I surely hope you have seen a professional well versed in Lymph edema. You need a series of lymphatic massages followed by wraps to decrease the swelling. There should never be any weeping. Here's a site with super amounts of help! http://www.lymphnotes.com/index.php

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  3. This comment has been removed by a blog administrator.

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  4. Thank yougret read. Does your feet sweat or does water just pool. I have lymphedema and I work 6 days a week because i cannot get disability.and at the end of the day my foot swells excessively and it bothers me like crazy and I have to keep taking meds. The pin for be is unbearable unlike yours with your lymphedema I hope you get better it would be nice if they have a cure.

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  5. I understand completely how you are feeling, I have CFSME and Fibromyalgia and experience the same types of loneliness you have described. I have been extremely unwell in the summer heat this year and have noticed swelling and mottling to my right arm. The flesh feels lumpy and sponge like, do you remember how you presented initially with lymphedema? Please let me know if you do as it really worries me. I think the doctor is now becoming impatient as I do my own research and refuse to give in to all this, they tell me I need to accept that this is my life now. I refuse!

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  6. I have CFSME(with fatigue crashes, migraines, pains and all the other frequent symptoms) and know all about not being able to participate in life and being LONELY. I also know all about not being taken seriously by the medical profession. Additionally I get lymphoedema after having had cancer surgery. I have recently found an excellent Yoga teacher who is also an occupational therapist with a super attitude. She not only runs a 'restorative' yoga class which is much easier on the system, but she also adjusts her class to my needs, even on the day. Additionally, on request, she's devised a brilliant, very gently programme of simple but effective exercises to do every day which are really starting to help me with my symptoms. It's a very slow process, but I really think it's working - one step at a time. And the nice thing is: the yoga class is full of people with 'ails and wails' where my limitation do not stand out. It gets me out of the house and I don't have to talk about my condition or justify myself either. At first I needed a compression bandage in my Yoga class but now we've found which exercises are beneficial and which are not so good for lymphoedema and I no longer need the bandage! The home exercises are helping me to get better and being more able to look after myself and hopefully eventually give me the ability to go out regularly and perhaps even return to some gentle part-time work. Honestly, it's been a god-sent. All I can say - life is still worth fighting for! Keep looking for YOUR solution even if you may have to think 'sideways'. It may take a long time, but there can be light at the end of the tunnel. I haven't seen it for the last 3 years, but the yoga teacher has really reversed that and she doesn't even know that...

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  7. Just reed your story its so like my own, ive had fibro since2008 and lymphdema for about 8 months fibro pain is level 6 lymphdema 10 its so painful I find it hard to walk don't go out much have no friends and my partner of 7 years walkedout on me couldn't handle yet another illness! Im finding it hard with thd pain I wear stockings but they dont much thank you for your story claire

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  8. Good to know, I am not alone with this, and my thoughts to all suffering from it. I have had lymph edema for 26 years on my right foot. When it started you could barely tell my toes from my foot. Just last year I was diagnosed with fibromyalgia, chronic fatigue syndrome, poly-arthralgia (joint pain), and chronic tendinitis. One day I woke up in so much pain,with my hands clenched into a fist. I limped around and couldn't even hold a cup.
    I am better than last year, but I am the best weather forecaster. :-) Frequent flare ups of pain, usually come together with neuralgia, extreme fatigue and depression. Although I go to bed at a sensible time, I wake up at around noon or even late in the afternoon.
    I itch uncontrollably without an obvious cause. Have skin issues I have never had before. I cannot control my body temperature. Cold or burning up.
    People say that if only I had a routine again. Good idea, I will schedule my flare ups to when it's more convenient for others. I can try to have a routine for certain things, but I am trying to accept that my life is full of times I have no control over.
    My plan of attack has been to get tests for anything I could think of. NOT to get ONE all encompassing diagnosis, but to EXCLUDE anything physical in nature. It is taking some of your power back being actively involved instead of feeling helpless. Do not expect to find all the answers, if any.Some doctors will shake their heads at you or be condescending. Don't let that stop you. Besides, there are other doctors more than willing to get your business. :-)
    RA, autoimmune, full blood panel, metabolic panel, full hormone work up, vitamin check, thyroid, nerve conductivity test, etc. My blood is fine, only that's not what is hurting! I do not have neuralgia, but have had the pain for a week before I got tested.
    I am in perfect health according to Western medicine. Good, then I shall run a marathon and lift a couple of buildings tomorrow. Who is with me? :-)
    Take good care of yourselves and be well.

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  9. Thank you for sharing this. I've had severe bilateral Lymph-edema for 7 years, and it finally dawned on my doctor that there may be a link between Lymph-edema and Fibromyalgia. For 7 years I've taken Neurontin and Norco for severe pain, because every nerve ending in my legs were excruciatingly painful . I did my research because my condition had progressively a year ago and I could not understand why. Then I saw it over and over, in all the research I did. Neurontin causes severe edema. That edema had blown the size of my legs up to over 125 to 150 pounds each. With my body, that's carrying 3 people around. No wonder I'm exhausted all the time, and with that came the tons of pain in joints I had never paid attention to. He asked me yesterday, "why was I in pain?" What a loaded question as I desperately sought to restrain my anger with this doctor. Look at me, and the pitting that I have, and why I'm in here!" "I don't want you to keep shoveling pills at me; I want you to find out what the pain is stemmed from!" To that he answered that the only reason I was going through this was because, "I was fat, and if I was not willing to take personal responsibility for that, then he could not help me." I looked at my husband who finally threw up his hands, and said to our doctor "You can't massage or pump fat out of her legs to reduce them in size." (Thank the Lord that he could coherently vouch for me). I then said, "You are so right Dr. You can't help me." This is just a short synopsis of what I went through yesterday in order to get this person who has been in our family's lives for 20 years to finally refer me to a rheumatoid arthritis physician. He got up and said as he walked through the door, "It's probably Fibromyalgia." He signed a small Lyrica prescription for me with his nurse and left the building for the day! Just another pill. I'm very cynical when it comes to doctor's helping, but now I know what I'm aiming for this time. So, please take care of your weeping legs. I've been on antibiotics more times than I know what to do when it comes to infected or compromised skin. Blessings to you.

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Life is all about learning. Sharing your thoughts will help us do that together. All I ask is that you keep the language PG and that you not leave mean spirited comments.