Lymphoedema

[Brandish54]

Lymphoedema problem have effected my mobility badly in the last six months .I have had this for 20 years and have cope with it pretty well until the last six months . Every time I change my bandages I do my back and have trouble moving for a couple days after plus my left knee I cannot straighten properly I have had three X-rays and they still do not know the cause . Now I have very painfull heels which means I cannot keep as active as I would like the doctor gave me some pain relief gel which is no good at all . As I cannot bear to touch my feet because they are so painfull

[kHP22]

I actually thought at first that I was reading my own post when I read the first line of yours . I too have had lymphoedema for 20 years and coped very well with it considering but have also gone down hill very quickly in the last year . I know I've developed arthritis in both knees and hips since 2012  but my mobility is terrible at the moment . I am so stiff and it's really painful . I don't feel at all safe when I'm walking and sometimes when I'm putting my garments on I seem to pull a muscle in my chest / stomach area and the pain stops me in my tracks . Don't know why everything has suddenly deteriorated so bad . I lost my husband last year as well so whether it's all just a result if extra stress on an already impaired system but it's quite scary 

[Brandish54 in reply to kHP22]

I also have walking probs as I trip very easy it makes me shake when I walk I am frightened of falling as I have done a few times I even lose my balance standing still i fall back against things it is very annoying and frustrating my mind is willing but my body does not work

[Snaomi in reply to kHP22]

Khp22 your post sounds just like me. I attended a seminar in September on Lymphedema. The USA is considered a third world country when it comes to this disease as our doctors receive less than 5 hours learning about the lymphatic system. Anyway, The seminar was such an eye opener. There are procedure that have been improved that are successful in reducing the legs and arms. I met some of the patients that have done it. I myself have met with two specialists and plan to proceed with a procedure called SAPL before the end of this year. I have throughly investigated and feel it will give me my life back. While it doesn't cure the disease , if after care is followed my legs will be normal size again. It reduces the chance of getting cellulitis substantially and will help reduce pain in legs, knees feet, joints and muscles. I am looking forward to getting my life back.

[floodc]

Poor thing I am sorry but there is nothinh I can advise you on this.

I have only deveoloped Lymphoedema in the last 2 years after a cut to my foot, I was 10 years free after have cervical cancer.

Wish you all the best and hope that you feel better soon.

[Brandish54 in reply to floodc]

Thank you very much it's makes me feel better reading your reply knowing people care

[Lindalou]

I have the same problem. Have coped for years with lympho. Recently had  a month of  DLT that reduced my legs by 10cm in girth, nice new stockings and wow! Back in my ankle boots then cellulitis set in for the umpteenth time so not able to wear compression garments. After 9 weeks of anti biotics, some intravenous, my legs are now mis- shapen and sore and my walking has deteriorated even more than it was before the therapy so not a happy bunny! 

[Brandish54]

That's the problem when you get cellulitis it knocks the stuffing out of you and you never get back to how you were before it sucks this illness

[completely-zero654 in reply to Brandish54]

Brandish54 and all, is there nobody else that understands how this affects us! I 100%+ agree with you. It does knock you for six and there is nothing in this world that can control it. I have arthritis in my back, hips as well as this. I want so much to do jobs round the home but am well and truly limited and as for ironing it is just one big battle, it can take days because I usually end up on the bed feeling so useless. I can not even cry to relive my frustration just end up asleep. I find it like others hard to live with especially when you think back to how and what you used to do. Just can not do it anymore and I despise it because I can see things that need doing. My husband is good but bless him he suffers from Osteoarthritis (sorry can't spell) and finds things difficult too. He has just turned 60 and I am 53 in July. We have been married since I was 18. We have 1 cat. Sorry to ramble. Seriously is there no medical beings out there who really understand what we go through??

[Brandish54 in reply to completely-zero654]

I think most of the time they frob you off they just cannot be bothered at the end of the day it cost them a fortune and they put you down as a burden to health service if we could afford to go private we would I know I would they are just selfish people that do not care because it is not happening to them I too see things that need doing around the house and it is very frustrating that I cannot do the simple tasks

[completely-zero654 in reply to Brandish54]

Dear Brandish54. As I do not go out anywhere or see anyone you do not know what it means to me that you are on the same wave length as me. I just feel so useless and wonder what on earth I am supposed to do. I have absolutely nobody to speak to. This site has been a god send to me otherwise do not think I would be around as I feel such a burden now, and that is not me. I used to be able to look after everything like cleaning, cooking etc., now it is just a job to get up and face life each day. Thank you for understanding and a big thank you to this site for letting us have a frank and communication with other.

[Brandish54 in reply to completely-zero654]

I know how you feel as I also feel like a burden to people but my attitude now is I do it if I can I used to clean the house from top to bottom and it is a three storey house it used to take me three hours but I was pleased with myself because I had done it now all movement is very slow and hardly have energy to do anything just sit most of the time my mind is willing but body is not and constantly in pain I was fine till 10 years ago as the time went on I got slower and more restricted but the last seven months is worse as I have got a nearly full stop what I think about if it gets any worse what happens then sorry to go on I hope you are ok I will be thinking of you

[completely-zero654 in reply to Brandish54]

You are not going on at all. What you say is so very true I do completely understand. Each morning I think I will do this and that but as getting up is a nightmare sorting yourself out like having a shower etc., your worn out and the thoughts for the day are gone of what you plan to do. Have only got a 1 bedroom bungalow and get that annoyed used to get round it in 1 hour. Now my husband hoovers, pegs out the washing, shops. I have not been out since October last year. I also rarely venture out of the back or front door. I too will think about how you are. Take care.

[JenH1942 in reply to completely-zero654]

Hello , I have just written in the same vein to Brandish 54. It's so good to know that when you are feeling at your lowest there is someone out there who can empathize .

Well, just know that you may not be able to get out or see anyone, there are some of us here for you who will understand how you feel and how lonely and scarey it can be. Just realise that you are not alone any more - we're here to listen.

Sent with love

[completely-zero654 in reply to JenH1942]

JenH1942

Hi, I am so very pleased that there are people, like you who are so understanding and caring as I have found that the LSN site is the only place where anyone can come and say exactly how you feel and what this "thing" does to you, not just visually but mental wise too.

Just say exactly how/what you are feeling and people are here for you. Never ever feel you have to cope on your own. xxxxxxx

[Brandish54 in reply to completely-zero654]

I am having a reasonably good day today what I call good means moving about a bit more only because I was really lazy weekend did nothing only sat around ( how lazy I was too ) only moving to go to toilet . Anyway I know it will not last long never do . I used to have when I started suffering with lyphoedema a lot of good days with very few bad but sadly that has turned around . Try not to think of how it was very annoying that it has at times brought me to nearly a full stop . Anyway stood talking to a friend I have known since I was 5 now I am 61 i asked how she was as I have not seen her for quite a while she said oh I am having a bad day today got a boil and have to see doctor. I showing her simpathy she said how come I was walking weird I thought cheek I told her why she looked at me funny and said I don't believe lyphoedema can affect you like that not believing me she said try moving about more go for a good long walk that will sort you out . So that was the end of the talking as I was getting annoyed with her high and mighty attitude another person who has not got a clue

[DebiMcC]

I am so sorry it's so hard on you, sorry I don't have any words of advice just wanted to let you know  am thinking of you

[Snaomi]

Brandish, I have had Lymphedema since 2004. It took 13 different doctors before I got a definite answer. Originally I was told it was in my head. Ugh! Any way, the shoes and clothing are a real issue. However, the pain in my legs and feet have gotten worse in the past two years. I cannot even do an eight hour day usually. The good news is that I went to a seminar this past September for Lymphedema and found out so many things I didn't know. I met a doctor (specialist) that does the SAPL surgery and met a couple of his patients that had it done. They are so happy with the surgery. So I went and met with him and I am planning to have this surgery before year end. I will have two normal size legs again real soon. Can't wait. I also met with the specialists in Stanford as well and they can do same surgery. Long term prognosis is good if you follow the aftercare advise however can be real problems if you don't. After meeting with the specialist at Stanford and the specialist down south, I have decide the one down south is more for me even though price will be more expensive. I feel is compassion and team were a better fit.

[Brandish54]

Good to hear this let me know how you get on very hopefully best of luck

[completely-zero654]

Snaomi. Yes, please let us know what happens. Hope all goes well.

[Snaomi]

I will be scheduling surgery for October or December this year. Will keep you all posted.