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Hughes Syndrome APS Forum

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Massage and APS

Elleflo788 profile image
12 Replies

Hello I'm currently on Hydroxychloriquine and Aspirin for APS treatment, wondering if it would besafe to have a lymphatic drainage massage? I'm a bit anxious because my last PE was one week after having a pregnancy massage I hadn't been diagnosed at the time however I was on fragmin & aspirin and informed the therapist of my clotting history both on the pre assessment forms and verbally. Has anyone been told not have them?

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HollyHeski profile image
HollyHeskiAdministrator

Hi, I have been advised not to have any form of massage, especially to the head or neck.

If in any doubt, please get medical advice from your APS specialist.

Elleflo788 profile image
Elleflo788 in reply to HollyHeski

Thanks I maybe try contact haematology dept tomorrow to a message to my consultant. They weren't too concerned about me having massages to my ne ck when I had a whiplash injury maybe they might advise to avoid the arms legs.

lupus-support1 profile image
lupus-support1Administrator

I don't think you should have anything like this done without a recommendation from your specialists. In fact, any form of deep massage can damage the connective tissue.

I have severe lymphopedema & I can attest that even the gentle massage that supposedly stimulates the lymphatic system into working, doesn't do anything! It's very nice but until the scientists have an understanding of the lymph glands, they can't do anything. Both my legs are very swollen up to the thighs. I see a specialist physiotherapist at my clinic.

To reiterate: NEVER have any form of massage unless you are referred by your specialist!

With good wishes,

Ros

Elleflo788 profile image
Elleflo788 in reply to lupus-support1

Thanks, I will definitely seek specialist recommendations first now hearing your comment I did try to bring this up with rheumatologist but unfortunately she was not interested in listening to me just telling what I wasn't feeling. she did refer me for a bone scan though. I do have hypermobility which could be relating to connective tissue condition as I'm still at the stage of investigation I will have to wait for a physio referral. best wishes

MaryF profile image
MaryFAdministrator

Please follow the advice of your consultants I know deep tissue massage and Warfarin is a no no, but any sort needs checking first with your doctor, before commencing any course of massage. MaryF

Elleflo788 profile image
Elleflo788 in reply to MaryF

Thanks for your reply have left a message for my consultant so hopefully they will get back to some to time next week. I'm in alot of pain & I also have suspected idopathic intracranial hypertension I have lost quite a bit if weight but pain symptoms are getting worse and I am told I cant even take paracetamol by neuro( I react badly to most other pain killers) so thats way im looking at ways for some relief.

It Is actually the meds for the IIH that have caused the pain I'm feeling but I need to be on them to reduced the csf on my brain feel like I'm between a rock and a hard place at the moment.

Capricorn1965 profile image
Capricorn1965 in reply to MaryF

I was just diagnosed w APS a few weeks ago. I have had blood clot in my arm for a year not going away yet. Specialist put me on warfarin and lovenox injections. Hate injections. My INR still too low. He keeps increasing my doses. I'm going to ask if massage would help not touching blood clot area. Why no to warfarin?

HollyHeski profile image
HollyHeskiAdministrator in reply to Capricorn1965

Hi,, you are responding to old posts, can I suggest you start a new post with your questions?You do get used to the injections, I hope your INR gets to level soon.

Capricorn1965 profile image
Capricorn1965 in reply to HollyHeski

Thanks for responding. Hopefully I dont have to do the injections too much longer. Doc said should have been only 5 or 6 days. I'm on day 12. Unfortunately, I'm very sensitive. I dont do pedicures because that hurts my feet and when I tried to breastfeed I had 6 weeks of crying until finally my husband, mother and the nurses that came to my house insisted it wasn't worth the pain. So I dont think i will get used to the pain if a needle hoing into me twice a day. I'm incredibly black n blue n purple n red and I try to do it exactly as they said. Hopefully I can just do coumadin soon.....😥

hihannula profile image
hihannula

I'm pretty sure that if you are on aspirin, warfarin, any type of blood thinners it could cause bruising or worse, especially a clot could break loose if you didn't know you had one. Not too sure. Best of luck.

DortchRules profile image
DortchRules

There are several strict contraindications to lymph drainage massage

HollyHeski profile image
HollyHeskiAdministrator in reply to DortchRules

Sorry I'm a bit confused to your reply and it's a very old post - if uou have a question please post. I will turn off this post now as very old.

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