anyone else got lymphoedema & arthritis? how do you ma... - LSN
anyone else got lymphoedema & arthritis? how do you manage?
I was diagnosed in 1990 with arthritis and then lymphoedema in 2006. It is difficult to find the right balance. I wear compression stockings which seem to make my knees swell more, ive tried knee high and thigh high but no difference. I have to take regular rests between even the basic house chores.
Hi norberte I too have a mixture of lymphodema arthritis fibro stennossis etc and it does make life very awkward trying to do things and not straining legs back arms neck . I suppose you just get on with it. The bandaging on the legs has certainly helped with pain from feet but knees are not so impressed. xgins
I have both, my Lymph is in both arms and legs. My Arthritis in in back and neck. I also have Fibromyalgia.
What really eased the pain for me is the Hydro pools they are just amazing for both pain levels. But you have to tackle them both as individuals, get you pain relief for the Lymph sorted and get your pressure garments at a level you can handle, then your Arthritis team should them put a care package together to help reduce your pain and discomfort.
Ask to see a Physio and they can organise the Hydro Pool and some gentle exercise that can help on your good days.
I take many tablets for pain relief but my new level of Morphine dose seem to be controlling my lymph pain better now, my amitriptyline helps with sleeping and muscle and joint pain.
My Lymph Pain is so much better since i have started to have the limbs de-bulked by my Consultant.
I hope this helps. But keep on talking and we can all share tips. I have only been doing this myself for a few days and i have picked up so much from other users myself. Everyone seems to be genuinely helpful when you ask for help..
What Doctor are you seeing that prescribed morphine, I have had 8 back and neck surgery's,and no one wants to order pain meds they say it will only get worse and the doseage will only have to be increased. I don't know what to do, I have RA and lymphoma in both legs, which came after my cages and rods where put in. I in bad shape and I am scared now and don't know who to trust.
Like ninewells I suffer with all three - fibro, lymph and osteoarthritis. Life is extremely difficult...well not life, but mobility and housework, and personal care, and dressing, undressing....oh the list is endless. But I'm a fiercely independent person and sometimes overdo things in an attempt to hold on to my independence. I do live alone so I can do things in my own pace and time. I take regular rests inbetween chores and my living room is such that I can sit down to vacuum. I've bought one of those new cordless cleaners by that very famous inventor and it has helped me no end. I also bought a steam mop which also helps. I have learned to adapt most things to help me but I still struggle with things....like fastening my bra, taking it off etc. I am in constant pain and discomfort but I'm unable to take specific meds for these because of the meds I'm already on. But I keep upbeat as much as I can. Yes, I get down days, as we all do but I try to keep the glass half full as much as possible. Life is good!! XX
Hi Sue 32,
If i could see you it sounds like i would be looking in a mirror. Thankfully i have an amazing husband who is always on hand to help me when i get myself into trouble. Like yourself i am also very independent. much to his annoyance as i can end up making something worse for myself, if only i had asked for help sooner.
I think Underwear that fastens at the front is a life saver with our Fibro and Arthritis, i can't get my arms up my back to fight with hooks any more.
I to also have my good days and bad, but like you the Dyson and the Magic mop is all part of my cleaning utensils. The easier life can be the happier it makes us is my motto hehe.
Can you not get Morphine Sue32, are you on Amatryptoline for the Fibro, this has really helped with the pain factor and has now got me back into a sleeping pattern again. It took quite a few weeks to get to the correct dose, that allowed me to move more freely
Lack of sleep was a major factor in my poor health, this was due to all the pain, always worse at night i felt, my sleep was down to around 2-.3 hrs in 24, i was a limping zombie at times. But now i can say with a smile on my face i do get a good 8hrs now which has made such a difference to me and my well being.
I hope you have some real good mates who can keep your spirits up.
I have found that Hydro pools are amazing for the pain Sue32, if you have them in your area please give it a try. I had them 3 days a week from my Physio team and i really do miss them now. I have had two real bad Fibro attacks in the water they look like i am having a fit if you are unaware of my conditions, but its just the body going into spasms. The only thing that helps with that is Diasapan. They are very reluctant now to let me back in the water.
But if you get the chance have a go, it really does ease the pain and the leg pressure also seems to benefit from the warmth. You have to take it very easy afterwards. I never struggled when i got out the pool to put my stockings on, i always waited, got home lay down for the recommended 2hrs then pulled them on, they always seem to glide on better without having to use my glider sleave
keep well
Oh, 9wells, I'm allergic to morphine and amytriptolyne made me like zombie!! I take Zapain right now, but that tends to make me constipated!! I have tried Tramadol, which wasn't too bad, but made me a bit too sleepy! I think the vet is the next call!! ;-))
I to have all three, I also have had 8 back and neck surgery's with cages and rods, but it's getting hard to k|p the glass half full.
I have both and one leg is worst but it is lower limb and I do wear thigh high stockings and go to a massage therapist for lymph drainage and sometimes an acupuncturist..I take one alleve in the morning and one at night and try to walk with a walker..this has helped very little..thanks for your info it does help.....
think there are many of us with both, it makes life difficult at times, i just do what my body tells me. some days more than others do chores for an hr then have a break with feet up and so on, meant i lost my career as a nurse and all the authorities who care dont concider these complaints have an impact on life, what do they all know.
I also have met a very lovely young lady who has now started to have the same treatment as myself to reduce and debulk her limbs, but like you to, she was also a nurse and has now reluctantly had to give the wards up, not her choice may i add. She has now been given the job of an administrator dealing with kids, from the HR Team.
But the pain and discomfort she was having did not allow for her to work safely on the ward, for her own safety. But she is so unhappy that her career is now over after all the years she also put into getting to where she was.
I fully understand the emotional pain that you both must be having, I myself was lucky enough to be able to choose not to work as my husband could allow for this financially
I was medically made redundant from my last job as the Medical team all agreed i wasn't fit to work up to 10 hours a day and drive all the miles i was covering.
Now at home as a full time wife, i can take my time getting dressed, same with chores. the house has fully been re adapted to allow me to have independence when i am well enough to enjoy it..
Glad to be able to chat
Take care but enjoy every day
Bev, Ninewells
Hi,I too have both my Arthritus is in my knees....I was in agony with the pain in my knees until my GP withdrew fluid from behind the both patellas(kneecaps) using a syringe...I now am virtually pain free in both knees (Sheer bliss) worth havin g a word with your Doctor.I wear compression tights for the Lipoedema....Hope this helps
My GP told me that because the compression stockings are so tight it restricts the knee cap from functioning properly and this is why my knees make such noises and have so much pain. The knee itself cant rock along the track like when its not supported, so the knee starts to restrict and only does a limit bend, maybe this is why you had a build up pf fluid. So glad you now have better motion of movement and your now pain free again
I have had rheumatoid arthritis since I was a 3 yr old baby. I have always been larger on right side then the left. Now my lymp therapist syas I have prob had lymp all my life. I am anew to the lymphadema diagnosis. We are still waiting for my first bandadges to arive. I am a bit concernd that my primary care doc seems to think treatment for lymp is a waist of time and that the pain of wrapping will make it impossable. Not very encouraging. I have asked hime for 13 years what was wrong with my right side, esp the arm?! He had no clue. My right arm is 74% bigger then the left. Nothing will fit over it. I joind this group because my hubby is from England and we may move back and I wanted to see what treatments were there. Here in The U.S. the treatment isnt very good. Most times the doctors think were all just fat! I agree with ninewells on the hydro. The times I have lived near a pool have helped with the pain in all my joints the very best. I have both hips replaced and the left knee. Lots of pain. I dont take anything now for the arthritis except fish and flax oil with xtra vit D. lots of meditation as well and slow streching. good luck to you!
I am now thinking of trying Pilates, small gentle movements but it helps strengthen the core so when our limbs increase our body can handle the extra weight and correct our balance untll we get them back down to a more manageable size.. Glad the hydro pools are helping. Good luck.
Hi Everyone
I too have undiagnosed lympoedema, although its pretty obvious what it is after reading all about it on here, even though my GP says there is nothing that can be done. !! Also suffer from osteoarthritis in hips and knee. Left hip the worse as that is the leg that is the biggest. Right knee, that is the one taking the strain. I am also now suffering with both my thumbs, this is due I am sure to pulling the compression stockings on and off. I hope soon to start swimming pool exercises and hope this will help. Losing weight makes a difference as well. I have recently had trouble with my left heel and dont know if this is a knock-on effect of all the other trouble. So like lots of you, do what I can when I can. Try not to be too down beat about it, but sometimes it is a tad depressing. But we will put on a smile to the world and moan on here lol Have a good day whatever you are doing
My fingers have all grown little thick lumps on them where i drag my stockings up each day, , just on the first knuckle of each finger. So i know what you mean about your thumbs. Do you have a glider sleeve, they are fab if you have someone to help pull it off once your stocking is in place, but you can get into real difficulty if you try and use it yourself hehe. We all have days like that and faces for the public so your not alone.
Hi Ninewells, I have not tried the glider sleeve, but will try anything once. Did get something off ebay recently, which was okay for aiding to put compression stockings on to the feet but not for getting up the leg. So I shall indeed have a look, thank you.
Hi Harpy1, The glider is a green nylon sleeve, its double sidded, you slip your foot into it and it comes up to the top of your leg, you then pull your stocking on over the foot and the rest of the leg slips up on the nylon rather than sticking to your skin and giving you sore nuckles trying to drag it up.
Once your stocking is at its proper height the nylon glider has a pull strap on the end, if you have someone at home if you just hold the top of your thigh top gently, the other person can slip the glider back out from the toe end. Doesn't work oif you have a filled in stocking, should have said that.
If you dont have anyone at home its a little harder but you will find a way. I sit on my bottom and loop it over the door handle and pull my leg backwords and its left dangling on the door. The double sided slide is designed to roll over itself to slide with ease.
Once you have it off you just turn it outside in again. I have it in my handbag at all times and take it with me on all my appointments, nothing worse than loosing your dignaty trying to pull your stockings back on in front of doctors and staff, all eyes are on you, and you never get them back on the same way, on the way back to the car you always feel them sliding and if your not heading home then you know the full day will be trying to hike your satockings back up every few yards.
If you would like to see a photo drop me your email address on the message page and i will pop one over to you to let you see it in action.
Hi all
I have primary lymphoedema in both legs/feet. I also have osteoarthritis in the metatarsal bones of my feet (the bones that footballers seem to keep breaking!) due to being so active when I was younger - gymnastics and later hockey. It's a pain as there's nothing they can do for the arthritis apart from prescribe painkillers and anti inflammatories. I know I shouldn't take anti inflammatories as it can make the lymphoedema swelling worse but I'm sort of stuck between a rock and a hard place. Do I not take them and be stiff/in pain or suffer with swelling and no pain/stiffness? The swelling I can deal with by wearing my Norah Batty stockings so I continued to take my anti inflammatories as I'm not much use to anyone without them.
I have also been fiercely independant and used to doing things myself but I have had to bite the bullet over the lat couple of years and ask for help around the house and at work when I'm in pain and can't walk very well. Colleagues can't do enough for me nowadays, bless them. I don't have children and my hubby works away as a tramper in his lorry all week so some stuff doesn't get done until the weekend when he's home. But he has back problems and when we're both in pain it's like a comedy sketch sometimes with us trying to help each other and we end up giggling like schoolkids!
ha ha jinger, i know exactly what you mean - we're both disabled round our house, & if something drops on the floor it stays there till someone comes round!
i've got ra in most joints - used to keep it under control with a long 90mn stretch every morning & little top-up stretches during the day, anti-inflammatories (oh, i rue the day when vioxx / rofecoxib was withdrawn), a bit of tramadol & lots of ice
i did try hydro but i can't cope with how hot the water is - i have my showers what you strange people would call cold (it's hot to me!) & the freezer's full of ice packs
& over time i've had to allow more gadgets & gizmos into the house - perching stool, grab rails everywhere, things that help put clothes on & take them off (anyone got any good ideas re shoe laces? i have to wear lace-ups to keep my feet & ankles stable, & i can usually do them up in the mornings but by the end of the day i can't undo them again), kitchen gadgets galore ...
& now the lymphoedema has upset my ra apple cart nicely - it complains when i do some of my stretches (brilliant physio helps me problem-solve as much as i can), adds more heavy weight to joints, complains if i chop enough veg for a stir fry - even with my v sharp, weighted cleaver - & means i've had to stop the anti-inflammatories
which annoys me, cos they're quite happy to give me really toxic drugs for cancer, as many repeats of anti-migraine drugs as i want even though they increase chances of stroke & heart attack ....
get off your vioxx soapbox, norberte!
i'm going to be living on my own for a bit, & apart from continuing to pay people to do some of the things i just can't do, or i can do but only if i'm prepared to have a day in bed with diazepam & oxycodone afterwards, i'm a bit stumped
it's not like my housework standards are remotely high, but i do need to get some done sometimes! & i'll have less money so will have to do more of it myself - it is a bit disheartening, though, when it takes me 1/2 a day to clean quite a small kitchen by the time i've nipped onto the settee with ice packs for 10mn after 15mn of unloading the dishwasher & washing machine!
moan moan moan - every time 'born to be different' is on (a channel 4 series that's followed some disabled kids since they were born - they're becoming teenagers now!) i admire so much how they just get on with it!
I would like to reply to everyone who suffers from lymphodema, arthritis and blood pressure, which seem to have conflicting treatments, especially as I have now learned that my anti-inflams. are causing more swelling in my legs - so pain or swelling!? I take paracetemol and a couple of antis before going out. Back and hip pain kicks in after 50 yards walking. What I really complaint about is the lack of care available on the NHS for multiple conditions which are not life threatening but are chronic and make life difficult. There is general lack of understanding from GPs, even if they are good doctors in many ways, but they cannot help unless more research is done into multi conditions and finding out the best way of treating pain. I am lucky in that although my lymph condition in the legs causes heavy swelling, they are not painful unless hit accidentally, but the back condition is extremely painful. The blood pressure control, together with a diuretic, keeps me alive - now I am about 150/70-80. I think there should be a campaign to make the NHS do more for chronic illnesses. I am 80 and just have the feeling that old people are definitely considered defunct. I have many skills I could teach young people, even in my present state and could be more useful to society. Nothing is done to alleviate the present don't care situation. We have all paid for the NHS in one way or another. The Government are spending our money.
I have osteoarthritis, fibro and I've just been diagnosed with chronic osteomyelitis with septic arthritis at the sterno-clavicular joint. I'm finding it difficult to control my pain to an acceptable level. I'm taking Paracetamol and Codeine Phos 30mg but it doesn't really do much. I tried Gabapentin not long ago but it made me feel rather dizzy.....
I go to a wound center for my lymphodema plus i have a wound on my lower left leg. Also from hereditary suffering from severe osteoarthritis. Cant have surgery on my knee with history of blood clots. I suffer and cry in pain but try to keep moving some.
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