Lymphodaema & Peripheral Neuropathy

[nttsue]

I developed Peripheral Neuropathy (PN) several years ago & have had a few falls from not being able to feel where my feet are, in relation to the ground that is .. Two years ago, I fell down stairs, suffering a crush injury & a broken bone in my leg .. This led to the Lyphodaema ..

After the fracture I was given Physiotherapy - with hydrotherapy which helped a lot .. I can relieve some of the swelling by lying down with my feet up, but I can't live my life like that !! ..

I was prescribed some Compression Stockings, but have been unable to use them, as the pain from the PN becomes so much worse ..

I have learnt, through researching my problems, that people with Peripheral Neuropathy should never wear compression stockings ..

I write to ask how other people cope with this ? .. There are times when the pain from the PN is quite unbearable, and the swelling of my feet just adds to the discomfort ..

I write to ask what other could suggest ? ..

Thanks in advance ..

Sue

[Dodidoos]

Hi sue , sorry about the pain you are in ,you have given me some info I needed which is about the numbness your getting could you tell me is it through diabetes or something else as last yr I started with the numbness in my feet just the same as you I can't balance on my feet and padded shoes are no good either as I need to feel the ground so as I don't fall too the numbness is awful and my toes cramp up if I twiddle them about as I excersise my feet whilst I'm sitting. I have not gone to the docs about this although I've mentioned it but he didn't take much notice so I didn't push it , I have to Admit I'm scared it might be diabetes don't think i can cope with anything else lol hope you don't mind me asking you about this but I am grateful to you for sharing your story and hope you are getting some relief from it all. Best wishes DODI.xxx

[nttsue in reply to Dodidoos]

Hi Dodi, No, I'm not diabetic & my GP says he's not worried about a 'cause' as it won't affect any treatment .. Now that bit is true, as for the PN there really isn't any affective treatment .. There are anti-epileptic drugs that can help - but I couldn't cope with the side-effects .. And some anti-depressants help some people - but I didn't like the way I was nodding off to sleep all the time .. I'm left with paracetamol - which although they sometimes take the edge off the pain, they don't do much - or codeine, which again, sends me to sleep, so I avoid those .. I've heard there are supplements to take, but I need to check those against my BP medication I'm already taking .. But some people do say they have had good results with those ..

Do see your doctor about your numbness .. Like you, I didn't push it, and after my fracture, the doctors were more bothered about the lympho, which is good, as that bothers me as well - but, they seem to want to ignore the PN - which is not good ..

I had a back injury 40+yrs ago, which left me with nerve damage to one leg, and over the years this has got worse, & I'm thinking my PN is coming from that .. Now, I'm left with needing to "nag" at a GP's surgery where the GP is forever changing - which again, is not good - but I'm not going to give up ..

The thing is - "IF" you're not supposed to wear compression stockings with PN - which, since I heard of this, I've looked at the literature on the stockings, and it does give a warning - - - then what else is available for people like me ? ..

Sue

[Dodidoos in reply to nttsue]

I know it seems that we are not going to get any real answers to these questions I admire you for not giving up good luck in finding a solution sue please let us know how you get on. Best wishes Dodi.xx

[Lynora]

Do you have a good relationship with your GP and Lymphoedema Clinic? PN is horrible, and, as you have found, can be exacerbated with compression. I know of people who have benefited from MLD - although it has to be regularly done, as the effects can be short term. Does your GP know of a hydrotherapy pool in your area? This can help too. I am assuming you are already rattling with pain meds?

[Dodidoos in reply to Lynora]

No I'm not taking anymore pain relief trying to do without maybe a few paracetamols if need to take the edge off I have osteo arthritis and all those very strong pain killers were almost killing me I can't cope with the side effects of most tabs so was taken off them ..Now I would rather cope with it in my own way and try let my own body deal with things to a certain extent I am taking antibiotics right now as I have a slight leg infection due to a flare up of psoriasis so been given fusibate steroid cream I already have prescribed double base moisturiser. Well I must move now been chatting for so long and enjoyed reading all the posts I'm so glad I found this site. Enjoy the rest of your day Best wishes Dodi.x😃👍

[MaryMP]

I have both PN (fingers and feet) and Lymphoedema in my arm. I wear a compression garment on my arm, which I must admit does not make my fingers any worse. For the pain I am (eventually) on PREGABALIN and find it very good. I was started on 100mg and am now on 400mg per day and I understand it can go up to 60mg per day. I can now wear ordinary shoes and can walk much much further since taking these tabs. I understand they are expensive and was prescribed by my neuropathy consultant initially. Ask your GP or your oncology consultant to refer you for treatment by a neuropathy clinic. I am in London so lucky that one is on hand in Hammersmith Hospital. Good Luck

[beechgirl]

Hello, Our cases are really quite similar. I live in the USA although mum was born in London and I have a lot of family there I joined wanting to see if this condition was treated as "badly"on your side of the pond as it is here!. I had breast cancer 14 years ago, lumpectomy followed my chemo and radiation. I got neuropathy from the chemo.I also started having a heaviness in my legs and was unable to.climb stairs or walk.long distances. Then I too had a fall from not being able to feel my feet and broke my leg. After that healed 11/2" shorter than the other my journey began. Got rid of that doctor. By the way I worked in a hospital.ER for 20 years as a registrar so have many peers in the medical community as well as becoming quite knowledgeable. My next orthopedist told me I needed both knees replaced. I knew that was coming as I have osteoarthritis. Trouble was the doctor did the replacement on my "good leg" meaning the one that wasn't broken first. Leaving me without a good leg to lean on as I saw in therapy. My therapist recommended another doctor to do the replacement on the shorter leg that also needed reconstruction. This doctor at first was angry with me. He asked why I was doctor shopping. After seeing my x-rays and me standing my ground he was excited to take on my case. He did a wonderful.job. My legs were the same length. He was willing to write me as many pain pills as I wanted but he was done with me. In physical therapy again for the knee replacement I did well but saw much older patients doing so much better and much faster. Now my second journey began why? My legs and ankles and toes got very swollen. My primary doctor prescribed lasix ( a water pill) and kept giving me higher doses as nothing was happening except I was spending all my time in the restroom due to the pills. The swelling got worse. I went from one specialist to another. Peers of mine who wanted desperately to help me. They stared blankly and sent me to yet another "specialist". It was now time to see a cardiologist since swollen legs can mean cardiac trouble. By now I was only seeing women doctors as I was finding I didn't like the condescending way men handled mostly so called bedside manners issues. The cardiologist whom I had not seen before asks if she could have another doctor look at my legs. I had my entire medical history faxed over as was my usual . This very young looking gentlemen comes in and in about 2 seconds says the magic words.....you have LYMPHEDEMA. Turns out they now teach medical students about the lymphatic system, where as 30 years ago they spent 20 minutes on it. Thus none of my doctors not being able to diagnosis me. I lostvtrack of time...it feels good to get all this out. I must get ready for therapy. I will get back to you.....let me know if you'd like me to continue my saga . Possibly offer some information.

[Dodidoos in reply to beechgirl]

Please do come back you certainly have had so much to put up with I take my hat off to you I always like to hear other peoples take on these Issiues it helps take my mind off things and to respect that their are thousands of people out their with such cruel Health Issiues ..look forward to reading your next post. Best wishes Dodi.x😀😊👍

[beechgirl in reply to Dodidoos]

Hi Do i, I'm not quite sure where I left off. Yesterday was a blur. I had my first treatment for this second flare up. I had a revelation a few days ago, the woman who started the comitee that I am on here in the USA to get all insurance companies to recognize Lymphedema. The Washington Post was running a series of articles on medical mysteries. Heather (this woman).gave birth to identical twin boys 10 years ago . She posted pictures so cute, one baby ad rolls and rolls of "fat" and red hot legs. In the article she explains the nightmare she went through to get a diagnosis. Having his twin gave her a way of seeing how something was very wrong. They are 10 now , Dylan had 2 hospitalizations for cellulitis but after the parents learned what it was and whst needed to be done, he has led a normal.life with his twin but wears compression stockings. If snyone would like the article leave me an email and I will.send it. You could try finding it with google it was on September 29th in on the front page of the helth and science section.Seeing he picture of this baby made me reslize what I had always thought was true. Both my knees have a pocket of fat/fluid. I asked every doctor and even my lymphedema doctor told me it was fat. Everything now makes sense. The intense knee pain that has kept me home for 3 years searching for relief from the pain. There is also a crease in my skin on my thigh close by. Yesterday my new therspist told me I was correct. I did not have bilateral lower leg lymphedema. It is the whole leg. Those pockets on the side of my kness is the lymphatic fluid that has been pooling at my knees as I've only been paying attention to my lower legs with my compression garments aand the pump. I am so angry...not so much at the doctors they just didn't know..at myselg because I knew and didn't force the issue. I am 58 and have spent almost 10 years trying to recapture my life. My 2 sons are 34 and 28. I have a large enough coop.where we each have our own rooms. They live their lives but I believe they aren't leaving because they are scared and don't want their mum alone. I feel like a burden. My younger one has a girlfriencwho has lived with us for the last 5 years. Her parents home in down he block making it easy. When my son works she goes home to get clothes etc.She's living between both places. This lymphedema doesn't just devestate the patient, the family is equally affected. I must verve cup of coffee and figure out how to retape my bandage as it came apart as I tried to get some sleep. I will be back if anyone wants to hear more.....

not

[Dodidoos in reply to beechgirl]

Ok thank you for the info I will keep that all in mind ...Yes I agree a lot of things have fallen in place with me and my childhood and teenage.to young adulthood then at the age of 52 I had a fungal infection that did not respond to treatment that's when they found out about primary LD I was born with it and it took yrs for it to really start to give probs I'm now 67. And yet here we are again I'm still trying to get rid of another infection in my leg. Go enjoy your coffee hope to speak again soon. lol Dodidoos.😃😊👍

[Mattdh]

HI I have a short nerve version and I had some thigh high version fitted for an operation and have practically not taken them off I have been on many medications for it and have had some adverse reactions as I also have kidney failure. These things are amazing they work for me and I have been able to cut down on some of the drugs I have been taking. I take them on and off all day so they are probably on for 6 hours a day and it’s the best I have been so I can’t recomend enough.

[nttsue in reply to Mattdh]

Thanks for the info Matt ...