Don't know if I can tolerate any more lymphedema treatments

[Tinker]

Hi everyone,  Insomnia....my old friend.  I've been awake since 3 am. the second night in a row.  The ace bandages that wrap my legs from toe to knee just kill me and wake me up.  I rip them off but it takes 10 min to unwind all the bandages, gauze, etc.

My legs and ankles just hurt.  Now, my back is pins and needles.  Honest to God, this is almost as difficult as chemotherapy.  I go to the clinic everyday, they massage my leg (that's not bad) , put on these ballooon leg garments and then blow them up and let the air out over and over. 

Then, I get wrapped up again.  Gotta pump when I get home for another 2 hrs.  It cuts off my blood supply and I've taken the machine back in for re-calibration twice.  Taking it back again tomorrow.  Sleeping 3 hrs. a night ain't gonna cut it.

I hate to say it, but I'm about to be a quitter.  My legs have gone down and they really don't look bad.  It's hard to be motivated when my ankles don't look that bad. 

I have cheated.  I just can't pump for 2 hrs. when it's painful. And I've removed the aces .  Dropping out is on my mind. I just can't do this anymore.

I've uped the neurontin this am by taking 600 more mg. but my back is on fire and my ankles are killing me.

Neuro appt on Monday.  Can't wait to walk in with the bandages on.  I'll remain compliant until then just to see his face.   

Maybe I can catch some zzz's before I start all over again at 1 pm.  ugh

[Carolina]

Oh, dear Tinker.

I have a friend with Lymphedema in her legs.  It is terrible.

I've seen the havoc it can wreck.

Did you get to your vacation?

I don't always keep up with everything I want to.

The nights are always the worst, aren't they?

Gentle hugs

Keep us posted

Elaine

[Cassi307]

((Tinker))
My heart goes out to you. The treatment sounds so painful but look at the progress you have made. I would probably want to quit as well because pain is a great deterrent. Sending you thoughts of support. Maybe you can reward yourself with a vacation when this is done?

[CMNK12]

Tinker,
   I am so sorry, I was having that day yesterday. I feel like giving up sometimes too. I want some magical cure for this lung/breathing problem I am having because it is sincerely limiting my life. We can moan together if you want to. I will pray for you to have strength to make it through this and that the treatments will become easier. Sometimes it just isn't fair. I can try to be a cheerleader for you.....go Tinker go. Just doesn't sound so great through the web does it? Please know I am pulling for you, we all are. When it gets hard, know that. Take care. CK

[Nancy60]

Is there something you can take during the treatment to help with the pain or help you sleep?  As you reduce the edema the pain from the edema should get better. Maybe adjusting the pressure will help. Hang in there

Nancy

[irish]

I know how debilitating this can be. Have you been fitted for the Jobst stockings yet? Sometimes it takes treatment to get the legs down prior to getting on a more "normal" phase of the treatment.

I don't know what to tell you, but if you go without the treatment there will be issues to deal with down the road. Has anyone really sat down and explained the where and why of the whole thing. It is heck and more, that is all there is to it but hopefully there will be something that will kick in and make things improve.

Women who have had uterine cancer back in the old days used to be what we nurses would call "gutted". Sorry if that is so graphic, but it is the truth. The female organs were all removed as were all the lymph nodes in both groins. This would result in the lymphedema that needed to be treated all their lives. I am wondering if they have a short term goal for you so that you know where you are headed and why. Sometimes just knowing that there will be some changes that can occur and what needs to be accomplished to arrive at them can make a difference. Good luck. My prayers are with you as you tacckle this obstacle. Hang in there girl. Irish

[Tinker]

Just call me crazy.  I posted an update about this mess I'm in.  Not sure what's up but I am questioning whether anyone is ever turned away from that lymphedema clinic.  Other patients in the waiting room are spilling their stories which got me to putting 2 and 2 together.   I know I sound neurotic and just trying to get out of getting these treatments but I really have valid ?'s.  I should have been more discerning about this mess.

Irish, Nancy, CK, Cassi, and Carolina:  Thanks for your replies. 

Irish:  I still have the groin pain on the left but not the right.  Your prayers are very much appreciated and I'm sending them up for you, too.  They "forgot" to schedule my appt with the dr so I'll have to be in Rx for another week before fitting.  and they want me to be sure to buy the stockings from them. right

Nancy:  I'm already on sleeping and pain meds.  Can't take pain meds after 5 pm as it keeps me awake.  It's the tightness that is uncomfortable. I am sleeping w/out the darn things now.  I have to sleep or I turn into godzilla.

CK:  You are so cute!  My personal cheerleader...I like that!   

Cassi:  Thanks for that hug.  Beach coming in May...can't wait.   

Elaine:  Oh yeah, the nights are the worst. 

All of you are sooo kind and nice.  Thanks for taking your time to reply to a fellow sufferer.  You guys are probably way sicker than me.  What would I do w/out all of you?  My husband is wonderful but he can only listen to so much, lol.  I try not to overload him.

Smoochies to all of you girls.   

[irish]

Tinker, Now your have me curious as to what could possibly be going on at this clinic. You are right about needing to be discerning. MY hubby was at a renown back clinic about 12 years ago---much good press about this guy. Only the one doctor in this clinic and he was pushing water therapy at a special facility plus one had to purchase a chair from him for a bundle of money. We thought he was more of a shyster that a doctor. We left and never went back.

I hope that this place is treating you correctly and not wasting your time and money---or causing you more pain than is necessary. Please keep us posted on how this plays out for you. Good luck and hope your pain is less. Irish

[Tinker]

Irish, you won't believe the billing from my insurance company.   I have many questions, but I'll wait and see what the clinic expects me to pay.  This has created so much stress and I'll be glad when it's over.

Wish I'd gotten a second opinion for sure.  I'll fill you in when I know more.   

[Nancy60]

Tinker,
Sorry I can't remember all you have going on, but this just popped in my head from my PT school.
Did you say that you are having a scan to rule out cancer?  Not positive but I think the lymphodema pumps and massage are contraindicated if there is active cancer due to possibility of spreading the cancer through the lymph system. You might want to double check with your doctor.

Nancy

[Tinker]

Nancy, thanks for your reply.  No, I didn't mention cancer, but the groin tenderness made me wonder.   I found out today that the groin tenderness is actually hip arthritis.  It's better than cancer, but doc says I may need a hip replacement depending on how bad the pain gets.   So far, it's just another bump in the road.  I can handle this.

I have much news to spill as soon as I rest up.  Big day today!  Lot's of things cleared up and rectified. 

[Cassi307]

Tinker I know it sounds odd to say this but I am glad to hear that it is just arthritis causing your pain. I get that kind of pain in my hip andI am probably heading down the same road. I also need my left knee replaced and my right knee is not far behind that. Synvisc bought me some time.
I am glad things are looking better.

[susanep]

The Jobst Stockings have really helped my husband's legs, and my dad is getting fitted for some soon.

susanep

[Carolina]

Well, the BAD news (hip replacement) becomes the GOOD news (no cancer)!

Ain't life grand?!

I'm taking my friend with lymphedema to lunch today.  She's been hospitalized several times for cellulitis and leg ulcers.

It's one wicked condition, for sure.  She had ovarian and uterine cancer surgery.  Now she's on prophylactic antibiotics for the cellulitis.

Please take good care of yourself, Tinker.

Hugs

Elaine

[Skylar]

Tinker, you mention wanting a second opinion - just because you started this treatment doesn't mean you can't still get a second opinion, especially if this place has sent up some red flags to you.

OTOH I wouldn't wish lymphedema on my worse enemy - it's one of those disease processes that you have to keep on top of daily to avoid all kinds of grief and health issues. I'm sorry you are suffering from it. I don't have it but I used to be on a forum where a number of members had it and posted about all their problems.

It does sound like you are getting the appropriate treatment and you're lucky to have found trained and certified manual lymphatic drainage therapists - it's hard to find this treatment in many areas.

Hopefully they will help you get the swelling down so you can get the Jobst Stockings which will be more comfortable and easier to deal with. I realize right now it's painful, but please don't give up on the treatment - without it the lymphedema will get worse, much worse.

And lucky you - no cancer - but you got the bonus prize - hip replacement in the future - something to look forward too.......NOT. So sorry.

I know some people are probably tired with me pushing diet to get rid of inflammation - but I'm telling you that you can reduce that pain in you hip by changing your diet. Unfortunately I don't think diet will do much for lymphedema - but my osteoarthritis that I've had since I was a little kid has gone into remission. I've fallen on my knee hard and was shocked that it didn't swell up, I could walk and even exercise on it right away - no pain except for the dime size area where I hit the floor - when I touched that area it was really painful -reminder that I had fallen. In the past even knocking my leg against the side of desk would have meant horrible swelling, pain and weeks of physiotherapy. You can reduce or eliminate that pain and maybe even avoid hip replacement or at least postpone it longer just with diet.