Eventually got cream and tablets

[Lynne-byn]

Thanks everyone for your help and support, doctor has given me a strong antihistamine and dermol 500 cream 😀 definitely helping still in pain but not waking up with myself scratched to bits. I did ask him to have a look at my medication see if could go up any, he proceeded to tell me that I shouldn't be on such high doses, was afraid of him reducing them so was all like well that's okay I'll wait on appointments & made a sharp exit lol! Hopefully I'll hear something soon as totally fed up. Enough about me how is everyone else doing? Xxx

[CCT67]

Good to hear you were prescribed antihistamine that is helping Did your GP say what he thinks is causing the scratching? What is the other medication you say he hoped he would increase - presume it's for health difficulties in addition to LE? Are you doing daily SLD and lymphatic breathing as well as regular MLD to help reduce/manage the unpleasant effects of LE? No medication can achieve what regular and properly undertaken lymphatic drainage does to manage Primary LE limbs. I spend 2 hours per day completing simple/self manual drainage on both my legs and lymphatitic breathwork to promote drainage in the deeper Lymphatics. I cannot walk if I don't complete such a time consuming management programme due to pain and legs that won't carry me. Wouldn't it be fantastic if LE could be managed by a daily tablet!! Better yet a cure! x

[Lynne-byn in reply to CCT67]

Hi CCT67 I still haven't heard from the lymphoemeda team so not doing anything as don't have a clue tbh. The doctor prescribed the cream & tablets they have helped but aren't doing anything with the swelling. I have replied to Lizzie66 about medication if you want to have a look as just saves me writing it out again lol 😁 I'm on crutches & have been for a few years as problem with hip bone and muscles surrounding it. It's definitely gotten worse and left hip starting to cause trouble, I reckon it's because I'm over compensating with it, so it's doing twice the work. Thanks for replying x

[CCT67 in reply to Lynne-byn]

Hi, I'm familiar with the meds you're taking and they help with non LE pain but certainly won't control LE swelling, compression is needed combined with MLD, SLD and Lymphatic limb exercises. The LE clinic will assist with compression but you can do SLD and exercises without the clinic as there is good instruction on the internet (also a lot of incorrect instruction) so I can give you links for leg SLD if that would assist? Hopefully you get the appointment soon!!

[Lynne-byn in reply to CCT67]

Thanks that would be great. I hope to get appointment soon will chase it up after paddys day as everybody be off or closed x

[CCT67 in reply to Lynne-byn]

Hi

Follow these instructional videos for abdominal breathwork - and then leg SLD. Always start with lymphatic breathing first before leg drainage. (The trunk needs to be emptied before it can fill up again with lymph from your legs).

Try to complete SLD at least twice daily - it takes about 30 minutes - don't rush through the sequence or you defeat the purpose. The more abdominal breathing you can do throughout th day the better - learn how to do it properly while lying down after you get the hang of it you can try it while standing and walking i.e. Standing in the queue at the tills or anywhere.

Breath-work stimulates th deeper Lymphatics of the thoracic duct where lymph drains back into the blood supply

Hopefully these asssist. X

blog.massagebyheather.com/l...

m.youtube.com/watch?v=rMljO...(Not working as expected?)

m.youtube.com/watch?v=ZLyT_...(Not working as expected?)

[Lynne-byn in reply to CCT67]

Thankyou just seeing posts now I'm definitely going to do them xx

[yorkiebee2]

Glad you are feeling more comfortable!

[Lynne-byn in reply to yorkiebee2]

Thank you yorkiebee2 yeah they definitely help, now need to get swelling under control x

[lizzie66]

Hi Lynn, glad you got some cream and anti-histamines - I did ask you what other meds you were on a previous posting but didn't hear back. I asked in case there were contraindications with some of them which GP's don't always pick up on - they should but are so rushed with the 10mins rule that they simply do not have the time. Hope it all settles down for you.

[Lynne-byn in reply to lizzie66]

Hi lizzie66 sorry I haven't seen that msg or I would've replied. I'm on a cocktail of medication which includes pain relief, (kapake, tramodol, morphine patches) 2 anti-depressants, stomach tablets, sleeping tablets the list is long. I still haven't heard from the lymphoemeda team which is unreal its the waiting. I've got an appointment coming up for stomach as producing too much acid so they going to measure the levels. I'll be interested to see if it's related. How ru hun?, Lynne

[lizzie66 in reply to Lynne-byn]

Hi again, well you are on quite toxic mix of meds which could well be contributing to your current situation. Like me! GP keeps giving scripts, I fill them, take them and wonder why I feel so awful. So I started to research each and every one and found the side effects unacceptable on 2 or 3. So, slowly came off them and one I am still tapering off which is Pregablin given for neuropathic pain. It works, but by altering the brain chemistry tricking the pain receptors into not delivering pain signals. And, it affects memory, language, gives brain fog, causes stomach problems etc etc. Unfortunately all man made chemical compounds have their risks and side effects. Am still on morphine patch 10, dihydracodeine for pain but am currently looking at natural remedies to see if there is anything I could try as an alternative. As for lympho, at least you have been referred - I have been back and forth to different GP's for 6 years now trying to get a diagnosis for the excessive odema in my feet, ankles, left leg. Not a chance, all I have been given as advice is to sit from 6 in the evening with my feet above my heart. No cause or reason given, no recognition of the discomfort, skin discolouration and itching, nothing, I know it is awful to have to wait but be glad you are going to see someone in the know sometime soon (hopefully), I use Balneum cream on feet and legs but although it helps the dryness and flaking it sticks to everything. Takes an age to soak in and even then gets all over the bed sheet at night. I really hope you get seen soon - remind me Lynne, is it secondary lymphedema, primary or unknown cause? Be kind to yourself, Lizzie x

[Lynne-byn in reply to lizzie66]

Keep pestering gp hun I took photos of the swelling legs and foot. I felt like no-one believed me so documented everything, and always made sure saw same doctor, at start even though was documenting by taking photos etc bc seeing different doctors I wasn't getting any further on. I told him felt like I wasn't being taken seriously and they thought it all in my head. He then felt the need to prove I was being believed. Don't get me wrong I've started over with ana doctor & he's now chasing up the other doctors referrals. Its unreal but keep pushing. I ordered the cream and the tablets myself the pharmacist told me too. The first time they turned down as said I needed to see doctor, had saw him few days earlier about hip & forgot to ask him, told them to ask him or ask him to ring me, script was done that day. I didn't see the point of taking an appointment someone else needed. Sorry for the long post, 1 thing before the I go be careful with herbal remedies can cause more harm. I don't know what caused lymphoemeda thought was having a side effect of medication. Keep chasing up referral and request cream etc, chat with soon x

[lizzie66]

Thanks Lynne, so fed up being ignored! I have 2 other major health issues they are trying to sort me out on, one is glaucoma (had a sudden onset of a rare kind and lost sight in right eye) and my spine is crumbling with severe osteoporosis. I know these are urgent but living with these feet and legs also gets me down and as soon as the warmer weather comes in the swelling will get so bad that I can't even twirl my ankle left foot and deep grooves form at top of foot and ankle (you will probably know what I mean by that). I have small pustules on my ankles and all round lower leg where the fluid is trying to escape and have to be so careful not to scratch them when they itch as I could allow bacteria in and end up with cellulitis. I am already on anti-histamines for pollen related allergies (trees and grass) and the cream I use my last surgery had on script but I moved and new surgery won't allow it. I can't even get to see my GP or get a phone consult about pain medication (been trying now for 2 weeks) let along get a proper diagnosis on my odema. Just get fed up at times, but I have a big sense of humour which gets me by. The remedies I am looking into are not herbal (bar one or two) as I know some can be quite dangerous. My Grandfather was a pharmacist so he passed on some knowledge to me before he passed. What a pair we are!! But we will turn it around I am sure

[Lynne-byn]

Hi huni just seeing msgs now. I'm glad your sense off humour helps but you do sound down. Not judging just saying here I'm one to talk I've had a bad couple off wks sick off being sore. I managed to get higher dose off antihistamines so fingers crossed. Here hun can I ask you about your pustules? When I swell really badly these marks appear they look like scars but strange only there when really bad. How's the natural remedies going? GPS are so diverse one says something then other ana thing, I try to see same doctor. Osteoporosis in your back frig love you I have it in hips one worse than the other, ostepenia soz spelt wrong. So how've you been did you manage to get an appointment with doctor. I'm no further on stomach playing up have s,I,t, on Tues been waiting so long for this appointment to, have to go off all stomach tablets for 5 days before it. Not good when in middle off a flare up so hopefully can stick it out. Definitely missing tablets as on high dose. Chat soon & take care xxx