Lynora8 years ago

Have you been offered MLD?

maxr1974 in reply to Lynora8 years ago

Yes, I had 3 weeks of mld and light therapy in November. I am not allowed any more on the nhs until nearer ny next appointment in 6 months.

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AMH28 years ago

I got nerve pain as a result of bandaging, I was initially on tramadol then pregabalin for the pain, which I was told I would be on for life. However, after 6 months I came off all meds to see how the pain was and it was bearable without so I have stayed off them. I have MLD once a week which I find really helps, I have private insurance whom I have convinced to pay for this. Do you have medical insurance?

Athinakay in reply to AMH28 years ago

pregabalin ( Lyrica ) can make healthy people's extremeties swell, I refused to take it as it is proven to adversely affect up to 7% of patients ( again, healthy not lymphedema sufferers ), the pain specialist thanked me for pointing it out to him, I wish he would give me half his fee! lol! Please check it out... As I mentioned above, lidocaine patches work a treat, no side effects, available on prescription.

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maxr1974 in reply to Athinakay8 years ago

Hi Athinakay,

I had not realised it had that side effect. Have noticed that things seem worse at the moment so i think a trip to the dr is wortthwile. Will look into the lidocaine, I think there was 1 other med they can try.

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maxr1974 in reply to AMH28 years ago

Hi AMH2 thanks for your reply, I am on pregablin for the nerve pain is helping a bit. have tried gabapentin which was brilliant apart from feeling as if i was in a fog, and a danger driving. I found the pain worse as I changed meds before upping the dose.

I do not have medical insurance so would have to pay privately, am trying to get back to work at the moment (a very active job).

I wear a compression sleeve everyday, also a glove sometimes if my hand is swolen.

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AMH2 in reply to maxr19748 years ago

Yes I was on amitriptolin (may be incorrectly spelt) but it didn't agree with me so switched to the pregabalin, which was better but I still didn't feel myself on it. I was lucky as the pain eventually subsided as it was more related to damage from bandaging than the lymphodema itself. Although I only discovered that when I stopped taking the pills as an experiment to check. I presume you keep it elevated when you can? Have you tried kinseo tape, farrow wrap etc? There are some NHS services which offer MLD and also some charities, you should call the LSN support network for some advice. Unfortunately you have to do all the leg work yourself with this condition to get the support and treatment you need

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maxr1974 in reply to AMH28 years ago

Hi AMH2, thanks for your reply. I think the first drug you took is the other alternative for me. I have not had bandaging have only used compression sleeves. Will have to look in to other ways of getting mld. Am trying to get back to full time work so finances are not great.

I do use kiniseo tape but can't leave it on for long as it starts to irritate my skin, need to use up what I have before i buy some sensitive tape.

Tried a lower dose of pills over Xmas and was in alot of pain so need something to sort it out, also have an active job so need to be able to lift and carry things about all day, everyday.

Thanks for the advice on charities will look into it.

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Rebec in reply to maxr19748 years ago

About getting kinesio tape free from the NHS, have you tried to ask the nurses at the hospital where you had the operation?

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maxr1974 in reply to Rebec8 years ago

Hi rebec,

I did not think I could get it from the nhs. i get compression gloves and sleeves on prescription.

Will have to ask lymphoedema nurse and Drs when I see them.

Thanks again I had not thought of asking.

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AMH2 in reply to Rebec8 years ago

I get kinesio tape for free from my nurse also

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Rebec in reply to maxr19748 years ago

Have you been given a kind of wavy foamy material to be put inside the bra for the two days during which you re not supposed to use the kinesio tape?

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maxr1974 in reply to Rebec8 years ago

Hi rebec, yes I have got some foam. I find it sometimes causes more pain.

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Rebec in reply to maxr19748 years ago

Maybe the pain is due to the bra being too tight with the foam inside it or maybe the foam hasn't been cut properly. Did you mention it to the breast nurse? Who takes care of you now, is it the breast nurse or the lymphoedema specialist?

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maxr1974 in reply to Rebec8 years ago

Hi, I wear belvia type bras supportive but not tight with wide straps. I see a MacMillan lymphoedema nurse. The foam I have is just a strip. Was given it before they tried the taping and told to put it in every day. How have you been told to use it?

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Rebec in reply to maxr19748 years ago

Hi maxr1974, The nurse who dealt with my lymphoedema which started in the breast, was in the breast unit, in the hospital where I was operated and she was the one who gave me the foam which is a wavy piece cut in such a way, that I can put it around the lower part of my breast. I was told to use the kinesio tape for three days, and use this foam for the following two days in order to let the skin rest a bit. The strange thing is that the sensitive tape irritated my skin and not the normal one. Were you told how to remove the tape so as not to damage your skin? BTW, have you seen your surgeon and asked his opinion about your pain as he should be the person to tell you if it's connected to the operation or the treatment thereafter. Also, how long was your radiotherapy for? It's sad that after we have such an operation, we have to go through treatments that make our life a misery although lymphoedema is due to our lymph nodes being removed.

When I developed lymphoedema in the arm as well, then I was sent to a special clinic for a few sessions if MLD.

If you're interested, I can give you my point of view about the different machine that are on sale to alleviate our lymphoedema.

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maxr1974 in reply to Rebec8 years ago

Hi, thanks for your reply. I have been told how to put on and take off the tape. Am currently covered on my left hand side with tape going in different directions. Have decided to see the breast nurse at the hospital I was operated on. Will see if she can get hold of the surgeon and get his advice. Have been stretching more lately and seems to slowly be working.

Always gratefull to hear other opinions of different machines out there have never given it a thought before.

Thanks

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Burntout in reply to maxr19748 years ago

If you are getting irritation from the Kinesio tape, this will only cause more of a lymph fluid response to the area. I would stop using it!

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Fit4eva8 years ago

Hi maxr - I am so sorry to hear that you're in so much pain with this. I had my mastectomy in 2014, chemo and radiotherapy etc. I only have the Lymphoedema in my arm and hand but I am trying the following to try and ease things;

- physio for the shoulder and under arm to loosen he scar tissue. I too have tightness, Although not as much pain as you, and I am hoping that it will help to ease the scaring and therefore the discomfort. I wonder if this would help with the tighness you mention?

- get some good quality mld massage - have a look on the lcn website to find a local practitioner. For me it's really helping to reduce the swelling and therefore the discomfort

- I have also just heard about a new treatment, with a piece of kit called a hivamat. I am having my first session today and am hoping it will help with the swelling. My nurse said she'd seen great results. Have a look on the physiopod website and again you should be able to find a local therapist. I haven't got the specific details on me now but if you email me I'll send you the contacts. Gill@gillparkin.com

I can totally understand that it is getting you down - I have that too. You sound at the end of your tether....ano I really feel for you. I am still early days compared to you and I'm of the view that a number of differnt things are needed to help manage the lymphoedema.....but there's no doubt it's just rubbish at times.

Sending best wishes,

Gx

Athinakay in reply to Fit4eva8 years ago

Good luck with your hivamat, I have had more than 10 sessions now, it helped both with swelling and my fat necrosis.

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AMH2 in reply to Fit4eva8 years ago

Hi, what is the hivamat? I'm willing to try anything! Are you london based?

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Athinakay in reply to AMH28 years ago

Hi, I live in Chislehurst but if you go on the Physiopod website, you can find all the MLD qualified therapists who use it across the UK. There is also a home unit you can buy if it works well with your lymphedema, as it is a chronic condition. It is deep oscillation, you can call Physiopod and they will expain all about it. My therapist is in Blackheath, S.Gibbs, fantastic lady!

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maxr1974 in reply to Fit4eva8 years ago

Hi Fit4eva, thanks for your reply. I had wle and 11 lymph nodes removed Sept 13.

Have done the physio and it worked at the beginning got full movement back, am trying to exercise and stretch the arm to get rid of the tightness.

I had 1 session of mld which was twice a week for 3 weeks, can only have 2 lots a year. Will look into other options to get more. Am trying to get back to work full time, my job involves lifting and carrying all day so I need to be fit.

Thanks for the advice on the hivamat, can you let me know how you got on?

it is good to know there are other people out there with similar problems. I was fine and fit before chemo, worked through 8 cycles before my op. Since then I have fatigue, nerve damage and of course the lymphoedema which is in my hand, arm, chest and now shoulder and a small amount on my back.

I know there is no point looking back to what was but it just feels like my life am not my own anymore and it affects my husband and children (aged 12).

Thanks again for your reply.

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Jayne508 years ago

H,

I have had swelling and pain since August 2014 in the chest and arm area. I had radiotherapy after a lumpectomy and sentinel lymph nodes. Been lucky to be having MLD every week but it is very much one step forward 2 back. My surgeon said it can take over a year for the effects of the radiotherapy to ease.

I also have kinesio taping and wear a sleeve when in pain plus lots of deep breathing. Uncomfortable most of the time but trying to be patient and stay positive. My nurse, the wonderful Katida, says some people just take a lot longer to get on top of it.

I also do pilates, walk and play netball - all with my compression sleeve on. I try to not let it affect what I do but I am definitely weary at the end of the day.

I think it is a long haul and just part of the journey. It seems harsh after what everyone has gone through but stay positive and just try as many things as possible. x

maxr1974 in reply to Jayne508 years ago

Hi jayne50, thanks for your reply, I finished radiotherapy Dec 13, the nerve pain seemed to be under control for a while, has got worse over the last couple of weeks, affects the fatigue which is worse at the moment.

I use the tape and sleeve, do sld. Do not exercise at the moment using up all of my energy trying to get back to work no energy left at the end of the day, weekends are a washout.

Have contacted a personal trainer at the gym at work to see if he can advise on some exercises and things I can do to try to get my fitness back.

Trying to stay positive, seem to be putting on a smily face for everyone, getting difficult at the moment. Will get sorted out, I know it will take time just cant see the end.

Thanks again for your help, it does help. X

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Swallow178 years ago

Hi

Like you I had surgery, chemo and radiotherapy for breast cancer and developed lymphedema in my arm and chest area. I also have pain, which ranges from mild to severe. My lymphoedema therapist says lymphoedema doesn't cause pain, I tell her it does! I have also been told that it's fibrosis due to radiotherapy and will only get worse. But I now have some relief. A lot of my symptoms seem to have been caused by a low grumbling infection interspersed with acute attacks of cellulitis. But my cellulitis isn't entirely typical. It usually starts with severe pain, if I get redness it starts much later. I spent a lot of last year having all sorts of unnecessary tests and being told what it wasn't but not what it was. The only person who listened was my lymphoedema physio and she arranged for a consultant to go through everything with me. I got a swab of my oozing fingernail beds (which no doctor thought important despite repeated attempts to bring it to their attention) and a fungal infection was discovered. The theory is that the fungal infection (which I must have had ever since chemo 4.5 years ago), breaks down the skin, lets bacteria in and leads to cellulitis. The fungal infection has been treated and I've experienced a marked reduction in pain and improvement in my lympoedema. Might it be worth investigating infection in your case? The trouble is getting someone to take you seriously. My GP, oncologist and others all knew about the fingernail beds but didn't take it seriously despite my repeated assertions. I do hope you can get some help and relief. I am utterly sick of being told I'm lucky to be alive, I certainly know that and am thankful, but lymphoedema can have a huge impact on your life and often isn't taken seriously. I'd really like to get funding to look into the management of lymphoedema (I work in research).

Do keep at the medics, you just have to make a perfect nuisance of yourself and it helps if you have someone to support you. I would have given up had it not been for my husband.

Apologies for this long post.

Athinakay in reply to Swallow178 years ago

Of course lymphedema causes pain!!! All that swelling and all those tangled tissues/nerves/ are pressed and inflamed even more... Good luck with the research funding, maybe contact one of the charities? There is also primary lymphedema which is even more distressing and severe!

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Swallow17 in reply to Athinakay8 years ago

Thanks. Yes, I certainly intend to consider both types of lymphoedema.

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maxr1974 in reply to Swallow178 years ago

Hi janefraser, thanks for your reply, I had an infected finger on my operated side, which started the day after surgery. I went to the Drs several times concerned about it as it swolen to twice its normal size. I think that is the cause of my lymphoedema, I had surgery Sept 13, told I had lymphoedema Dec 13.

I have had other infections which needed antibiotics and needed to take them for twice as long to get rid of the problem. No cellulitis thankfully.

My main problem is that I don't tell others how I feel, i think they think i should be ok by now, maybe fed up with asking how i am. I know that is my brain talking and that they do worry but it is difficult to open up.

Thanks again for answering my post it is appreciated. X

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Swallow17 in reply to maxr19748 years ago

Hi

I know, I'm almost 5 years on and people think it's all behind you, but it is never over, there is always something. On one hand, I just want to be normal and forget all about it, on the other, that isn't always possible with ongoing health issues. I too developed lymphoedema 3 months after surgery, just after a nurse took my blood pressure on my affected arm. When I said "no", she said it "won't matter for once". Next day I had pain and swelling. Perhaps it was just coincidence, but I do so wish I hadn't let her.

It's difficult to talk to people. I'm fortunate in that I met two women when I was going through chemo and we've kept up, meeting every couple of months. We find it a great support and relief to be able to discuss issues with each other.

Watch that finger, as my experience shows, it's possible to have a low grade rumbling infection throughout your entire system and not be too aware of it. I do so hope you will get the support and help you need. x

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maxr1974 in reply to Swallow178 years ago

Hi, I have a few friends who had cancer after me all alot older (I am 40) I know it is easier not to compare. One friend is late 60s, she is getting on brilliantly and we talked alot when she was going through treatment as she was very worried. I tried to help as much as I could. her hair is amazing (I have alopecia so mine was never going to come back) and she has got no other after effects. It just seems like everyone else is ok.. .

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Swallow17 in reply to maxr19748 years ago

Hi, I sympathise. My chemo friends are older than me and they seem to be fine while I rattle from one thing to another. One is retired and the other took voluntary redundancy. I really struggle with work, I seem to have a permanently foggy brain and am much slower, less sharp and forget things easily. I can only manage part time now. To cap it all i got catapulted into an early menopause with all the lovely little problems that brings. And like you it seems like everyone else is ok. Oh to just be normal again!

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Hidden8 years ago

Hi I had breast cancer surgery in 2009 followed by chemotherapy and radiotherapy. I still suffer nerve pain in my left arm with lymphoedema and also around my now reconstructed left breast and in the scar on my back where they took the skin from to construct my left breast. My lymphoedema Nurse has suggested I use Ibuprofen gel for the pain which appears to work very well. Sorry to have to say this but you have to resign yourself that you will never be back completely to how you were before. I am just grateful that I have survived breast cancer and take every day as it comes. Also go for counselling that helps. Regards

maxr1974 in reply to Hidden8 years ago

Hi, thanks for that. Have just read through my previous replies and I think I need to stop complaining. Need a kick up the rear sometimes, and to stop feeling sorry for myself.

Time to put the smile back on.

Thanks x

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Jayne50 in reply to maxr19748 years ago

You are not feeling sorry for yourself. Just when you want to put the cancer behind you, this reminds you every day. We have to stay positive but also forums like this allow us to be truthful and share things. I have found through my experience that talking to people who are in the same boat really helps. So don't be afraid to have a good moan - its bloody awful this lymphedema sometimes . Sounds like we are all trying to get back to our "new normal" so don't be hard on yourself. xxx

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Bluedolffin8 years ago

Hi guys, I agree with u guys. This website. When I got diagnosed with lymphedema tarda I thought I was the only freak with this. It is apparently very rare since mine has been caused by a car crash. I found lots of comfort on this blog.

JMP1238 years ago

Hi Maxr,

Is it cording that is affecting your arm movement? I had a WLE, 4 LNs removed, followed by Rads. Rads ended Feb 2014. I was told to do exercises to avoid "cording" happening down the arm.

It may be an idea to speak to your Breast Care Nurse ( you can still see them when you've finished treatment); & enquire about cording.

If it is this, a Physiotherapist should help you by working on the area in question. Maybe see your GP too & ask if it's cording? Have you looked at the Macmillan forum for Breast Cancer & recovery? It is really helpful for advice and support. I look on it regularly.

If it is not cording, then ask your BC Nurse to refer you to someone in your Breast Care Team who can look into this situation.

In other words start making a fuss!!

Best wishes Judith x

maxr1974 in reply to JMP1238 years ago

Hi Judith, I have been doing more stretching and reaching and I think it I slowly working. Still have pain when I stretch but will persevere.

Am going to make an appointment with my breast nurse to see what her opinion and the surgeons are about things.

I have been fighting for things for what seems like forever, will have to start again.

Thanks again I appreciate the replies I have had on this subject. It has,definitely helped.

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JMP1238 years ago

Hi Maxr,

Please don't feel that you should apologise for being fed up !

I have just read through all the replies others have posted here. It is not easy when there are reminders & we want to move on, I agree.

In 2013-14, I had 3-4 bouts of Cellulitis, and saw Lymphoedema Consultant Professor Mortimer at The Royal Marsden in Sutton. He prescribed Penicillin VK 500 mg daily for a year initially.

I had pain in the breast operated on, and it is still tender. The Lymphoedema practitioner I saw last in Jan & she still can't do MLD on the area as it's too uncomfortable.

My next appointment's in March.

I take Arimidex Astra Zeneca as E+ .

Was on Anastrozole & had bad joint pain ( especially on Accord). So following 4 months to & fro between GP & consultant finally got prescription for Arimidex. I really hope it's better for me as expected to stay in it for another 9 yrs.

I hope that someone can provide you with a solution to this side effect of the treatment. Judith x

maxr1974 in reply to JMP1238 years ago

Hi Judith, I am on tamoxifen, had a few problems at the start but seem to be ok apart from the flushes..... Will be on it for another 4 years before they change to something else for another 5 years.

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