arm still swollen!

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

Moderators: Birdwatcher, jenjay, Cassie, patoco, Senior Moderators

arm still swollen!

Postby butterfly » Tue Sep 05, 2006 7:46 am

Hello just checking in to say my arm is still a bit swollen. it is a bit sore and I am now aware of it being a bit sore when I do things with it. Not at work this week-on annual leave. I have quite a manual job so it will be interesting to see if not working affects it. I am going to le therapist on sat. My face is also a little puffy. It had gone down last year from my mld after being quite swollen on the right hand side of my face. It used to be agony when it swelled and I used to dread an attack of swelling which used to up and down and push in all the nerves in my face and cause pain. Anyway it went down after we discovered I had le from a lovely le private nurse found from lymphodema network uk, and finally got some mld, and after a few sessions it went down. I also had problems with my arm at that time and shoulder. Again this went down. My arm now is back being swollen an my face not as bad as it was but tempremental! Of course the le then went it to my lega nd was discovered in my hip which I ahd noticed in my hip but didn't now what it was. Then it travelled into the top of my leg. Anyway I'm wondering why it is moving about like this. My le therapist says my arm should go down and says she is not sure whether it is related to my bout of celluitis. Any ideas? Sorry for the long post!

Postby butterfly » Thu Sep 07, 2006 7:44 am

anybody any ideas? Pat?! Thanks.

Postby patoco » Thu Sep 07, 2006 8:23 am

Hi Ya Butterfly

I think what really concerns me is that it sounds like your entire lymphatic system is at risk.

Before lymphedema actually "settled" for good all over me, it would move about much like your describing. Really strange experience.

One way a lymph doc explained it to me was that evenutally, with we long termers (especially primaries) what happens is that the lymph valves can actually be damaged thereby causing a "spread" of the lymphedema to formerly clear areas.

Another thing that happens with long terms is that the superficial lymphatics become dilated as a result of the constant swelling and pressure. When this occurs, additional swelling results because the lymphatics are unable to function.

It stunned me in a biopsy last year that the skin around the tumor had this dilation. Its called lymphangiectasia of the skin or cutaneous lymphangiectasia.

Great stuff huh? SO I originally had lymphedema because of missing nodes in the inguinal added to that are failing lymphatic valves and dilation of the cutaneous lymphatics.

Now, here the thing. Pay attention to the warning signs (wish I would have known too) talk to your therapist and start doing self massage for the ab and arms, learn breathing exercises...everything.

Start now and perhaps you can get it under control before it gets bad.

Butterfly, this all over lymph is the most miserable experience I have ever ever had.....

Let me know how it goes Saturday!!!!!

hug to ya :!: :!:

User avatar
Site Admin
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Postby butterfly » Sat Sep 09, 2006 11:31 am

Thanks Pat . Went to therapist today. She agreed that my arm is still swollen. She did some mld on it. She says she reckons it will go down and away eventually. She advise to my manual job -i work in a library-I should try and use my left arm more. we are both waiting for me to get an appointment with prof. mortimer so I can get the lymphoscintigarphy!?! so we can see what is going on. She said it might be that I have underdervloped nodes of my right groin so this might be causing the problem all down me right le side. I just want to get this down it would help her and me so much. This theory would fit in woth my other disabilities and problems-I had a delayed puberty and this is when the le started in my face and knees.-mostly right knee. I had this swelling d=for about seven yrs before I was diagnosed-by hten it was in my face and a bit in my shoulder, and a bit in my hip,then the top of my leg, and now my right arm, right top of leg, and still a tiny bit in my face/neck. She also sid my bottom was tight but improved with mld, as with my arm. She ias also going to do my face if it's still bothering me next time in a bout 2 weeks. I just hope my job dosen't excarbate my arm too much.

Postby silkie » Wed Sep 13, 2006 3:12 am

Hiya Pat,

This whole body lymph
can i explain in my non medical jargon

Our bodies make X ammount of fluid everyday right.

Those of us with lymphodema have to help the fluid out of our body
with mld and wrapping right so far

When we wrap a swollen limb the fluid has less chance of settling there right but We are still producing the same ammount of fluid just less places for it to go

Now here comes the fairy tale stuff

If that fluid is restricted from going its natural course thru wrapping
it must go elsewhere . right

ok does this now Extra fluid the rest of our body has cause pressure on the good lymphatics weakening them?

and does it mean the more we wrap still making the same ammount of fluid the more underpressure we are putting the lymph system thats working?

does this mean there is such a thing as overwrapping?

wrapping to soon?

I am a BIG BIG champion of MLD it serves my lymph well
and it helps me swelling to bursting point

but i do worry that this delicate intricate system was made for perfect conditions and the added pressure of extra lymph fluid on the parts of our bodies that are not wrapped could be one possible reason for lymphedema spreading.

many lymphers start wrapping as soon as a swelling occurs on another part of the body is it possible massage would be better in the early stages?

just some thoughts same with pumps they push the fluid from our lymph limbs but how much does this extra fluid going into another area weaken another part of our system

I was taught here in the uk with leg lymph to massage from toe to neck
to help the fluid ALL the way up the body if we only do the infected limb
does that leave us with like a build up of fluid waiting to push its way on up our system adding to the load of an already hard working gland?

lots of thoughts

wonder if you have any

I do think this needs so much research


Silks xxxxxxxxxxxxxxx
User avatar
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Postby Kim » Wed Sep 13, 2006 2:29 pm

As my LE has spread all over my body, I have been wondering the same things that you voiced, Silkie.

I'm not wrapping my arms yet...putting that off for as long as I can. The fluid has now moved into my chest, neck, and back; like I said...all over. I kind of picture the body as a balloon filled with squeeze one forces the fluid elsewhere. I do MLD from head to toe and back every day and work on my arms off and on throughout the day. This has happened so fast...not even two years yet! Scary to think of where i'll be next year!!!!!!!

I sometimes wonder if I started wrapping my upper legs and compressing my stomach/groin area to soon. Would the fluid have moved up into my chest and arms like it has? When I first got LE in my lower right leg, every other part of my body was fine...not even a HINT of LE anywhere! So did wrapping further and further up the body, overload and overwhelm the healthy parts of my lymph system? Or is so connected that it wouldn't have mattered one way or another?

Can't turn the clock back, but some research and study into this might be beneficial to others.

Posts: 95
Joined: Fri Jun 09, 2006 12:57 pm
Location: Texas

Postby silkie » Wed Sep 13, 2006 4:39 pm

Hi Kim

I been thinking so much today Of you , Lisa and Pat

We have lymphedema and we wrap and do mld

take all the precautions I for one am so glad i have some control

it is moving but then im 55 and had it from puberty and was totally neglected till i was 52

In all our endevours and our fighting for recognition and help from the medical community we i think put to the far recesses of our mind the fact this is a dibilitating condition. And unfortunately sooner or later all of us face the battle you are handling now When all our efforts for many a life time and for some like you a short time suddenly seem to be inefective.

This is why we need more and more research

and why im thankful each day for our forum, where we can come

and not only learn about how we can care for our condition and share our worries but in a way learn how to cope with what ever the future brings

Respect Kim .Lisa and irish
Respect to all lymphers and there bloody minded determination to

not to let this lymph take over completely our lives

lymphers are a pretty amazing group


Silks xxxxxxxxxxxxxxxxxxxxxxxx
User avatar
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

lymphedema spreading

Postby suzeeq » Thu Sep 14, 2006 11:43 am

Hi Kim,
I was told by my therapist that you have 4 regions in your body - left and right and below the waist and above the waist. My LE started in my left leg and foot. This summer it has increased to my lower left part of my abdomen and left buttock. She has assured me that it won't cross over, that it should not go above my waist or into my right side. However, it could go there if I have defective lymph vessels or nodes on the right side which so far have not caused a problem yet. That is why I am having the lymphangioscintigraphy. to see if there are any problems with my right side. I obviously have problems with the left side, and this test can tell where any obstructiions are or if I was born without vessels or lymph nodes. What is hard for me to understand is why I was fine for my first 48 years of my life! I will have to start wrapping when I get back from seeing a specialist. But don't have any other option as my leg keeps increasing in size.It has increased 1 and a half cms. just since June. I'm anxious to see if the wrapping helps. I will just do it at night and wear my compression hose during the day. I do understand your concern of it spreading and I do think the pump might cause problems after reading up on it. Will just have to try the wrapping and see what happens.
Posts: 81
Joined: Mon Jun 19, 2006 7:05 pm

Postby butterfly » Thu Sep 14, 2006 2:57 pm

well my arm is sore! I'm a library asssitant and do alot of lifting and carrying and tidying of heavy books and reptetive movements. I also think I have some le in back at the moment too,plus my bottom was sore today with more swelling. I don't wear compression tights right now-too hot! But I have been wearing compression shorts now and then. I have agreed with my therapist that I will my tights in winter. My boss was asking today I am going to get a compression sleeve for my arm. I think I would like one if this swellling continues. What do you think Pat?

Return to Lymphedema Personal stories

Who is online

Users browsing this forum: No registered users and 2 guests