Problems with stockings!

[megs2]

Hi, anyone have any experience with using a compression pump nightly but no compression stockings? I know it’s not recommended but I have spinal issues & the stockings increase the pain & reduce my ability to walk distances etc when combined with the pressure/ nerve pain etc. I wonder if anyone has combined exercise, nightly pump & mld treatment w a therapist with any positive outcomes? Thanks. Megs

[veriterc]

Same happened to me - I had polio, couldn't pull on stockings nor use Farrowrap, but a Hungarian nurse told me they advised MLD. NHS has cut back and won't do this any more, so I got my MEP in Brussels to get CCG to approve MLD in a private hospital. Swelling went down dramatically, and I maintained it with monthly MLD which I paid for. Then I went for a trial with the Haddenham machine, and now I hardly ever have swelling - maybe have MLD every three months or so Go for it!

[Lynora]

I have 2 clients who cannot tolerate garments. After a phase of intensive treatment (MLD daily for 21 days) both responded very well and the lymphoedema reduced significantly. Neither, though, could afford IPC, so instead use Velcro wraps overnight.

How long do you use the IPC? Do you treat your upper body (SLD) while you are using it, and lymphatic breathing?

Are you still swimming?

[megs2 in reply to Lynora]

Thanks lynora, joint reply above

[CCT67]

Hi Megs2

There are compression options other than stockings/hosiery eg wraps which may be a better option as you can adjust wraps unlike hosiery. If you’re in the UK check out Haddenham Easy Wrap which is the least bulky ‘low profile’ wrap system on the market and available on NHS prescription.

In addition to pumping once daily try dry brushing, doing self lymph drainage, or swimming (natural compression) to promote lymph drainage which is ideally needed more than once daily, pumping alone is probably not sufficient, especially if not using daily compression therapy which is a main component of LE treatment to prevent/slow disease progression.

You may want to consider wearing a night garment. Night garments do not have the same strength of compression /tightness as they are not gradient compression that we need for waking around to counteract gravity effects. Are you under a LE clinic? discuss with the LE nurse specialist, or MLD therapist Perhaps the Jobst Relax would be a good option for you. It is used at night and when home relaxing. From personal experience the Relax is comfortable and not hugely tight like day compression so could be a good option for you. Jobst Relax can be obtained via BSN Medical here in the U.K. it’s a bespoke made to measure garment. Wraps can be worn at night but can lead to feeling rather hot or are just too bulky feeling in bed. Try and see how you get on with wraps as the leg Relax is not yet on prescription.

Having MLD is important if not using compression therapy, the more the better (2 x weekly) especially if you do not add self lymph drainage 1-2 times daily to your evening pumping. Do ensure you prepare to pump BEFORE starting the leg programme by opening up your drainage pathways (clavicle, axilla, inguinal) and doing a lot of lymphatic breathing to move lymph fluid out of nodes under your abdomen up your thoracic duct (this step is crucial for lower limb LE and as you have lower trunk LE which could increase if not addressed via lymphatic breathwork. (Breathwork before pumping is often not highlighted by pump sales reps or instruction videos/leaflets). It’s also best to do more breathwork after the pump programme to promote drainage of the lymph that’s been drawn up from your legs by the pump; this is an important step as you have lower trunk LE.

Ask a Qualified MLD Therapist to show you how to ‘open up’ and prepare drainage pathways. Don’t have MLD with a traditional massage therapist who isn’t fully MLD Qualified (including membership in the professional organisation MLDUK.org.uk which vets therapists and ensures standards are upheld), as they do not receive suitable or sufficed training to work on a broken lymphatic system and could do more damage than good!

Not sure if due to your spinal issues you can do any light exercise but it’s important for our lymphatic system to engage in movement to engage the ‘muscle pump’ action which promotes lymph flow. Swimming, light rebounding (on a mini trampoline), walking, and yoga are excellent options for lymph flow and drainage.

All the best,

Catherine

[megs2 in reply to CCT67]

Thanks CCT67, joint reply included.

[megs2]

Thank you all very much for your replies.... it really helps... there is no medical treatment in Ireland or clinics for primary lymphodeema so your answers help a great deal. I have prolapsed another neck disc & can no longer swim as the arm pain is very severe. I’m walking & now using a stationary gym bike with a wide seat, which reduces the chances of leg pain from my lower spinal issues, once I take it slowly. I can afford to pay for mld once a month & I’m lucky enough to have a full trouser suit w a pump, without which I could never manage. I use the pump for 1 hour just before bed & in the morning my swelling is completely down. I do do sld with the pump & deep breathing. With the garments flat knit & the other type, the pain increases the more I do, my ability to cover distances etc reduce dramatically & my drug requirements increase a lot & that’s with having 4 monthly spinal shots for pain. I will consider the nightly garment too, as I hadn’t thought of that, if it’s lighter. I’ve tried the wraps at night & they are also an issue pain wise & I cannt affoard any more equipment. I also find that as I’m affected from the chest down that the garments etc are shoving the lymph up into my abdomen so that I have a hug gut each evening that sld does little for. When I don’t wear garments my shape is more even, though swollen & the pump & the overnight sleep empties everything out. I will plod on & measure & pump & watch this space! Thank you for your help & kindness everyone. Megs

[LadyL07]

Megs2 I have primary lipo-Lymphoedema and back pain which causes pins and needles and numbness in my legs and like you swimming definitely makes it worse however, walking in water really helps. Our local hotel gym has a 25m pool that’s one depth so walking lengths here is ideal. I hope this together with the info from others will help 💜

[megs2 in reply to LadyL07]

Thanks ladyL07, the swimming while I could do it & the walking in the water definitely helps. Unfortunately I cannt affoard the swimming entrance & the gym for the bike as well. So now I’ve gone for the bike for now 😅

[LadyL07 in reply to megs2]

I’m not sure where you’re based but just a thought... check with your GP surgery and local council, very often they have cheaper memberships at leisure centres for locals and off peak times, some GPS are also able to prescribe 12 week programmes where it’s either free or a minimal cost 💜

Try this link

better.org.uk/leisure-centr...

[megs2 in reply to LadyL07]

Hi LadyL07, thank you for the thought, unfortunately where I live in Ireland there are no such special offers. The cheapest monthly membership for swimming alone cost €40 per month. As I cannt work anymore that and the use of the bike, is out of my reach. I’m hoping if I use the stationary bike 3 times a week that it might help. It’s getting the balance with it working & not causing more pain. Life’s complicated isn’t it! Thanks for the idea, perhaps someone in the Uk will be able to use that tip. 🙃

[buddygreco]

Compression stockings are very difficult for many people, its NOT a one size fits all to use them. I have arthritis in some fingers, pulling them on hurts too much, the devices are frustrating & not easy to use requiring help! l use the compression pump, the whole body vibration, CVAC, walking! no stockings!

[megs2 in reply to buddygreco]

Thanks it’s reassuring to know there are people managing to control things with alternative methods where necessary. It will take work but I’m going to try it & enjoy the reduction in pain... that will be a novelty.... a first in the last 5 years... pain is hard enough without using things that increase it to this extent.