hi, i'm new to this and need some help. been back and forth to the dr's for over 2 yrs and have finally been disagnosed with lymphoedema. throughout this time i was semmingly dismissed and one dr even told me it was all in my head. i'm swelling from my waist down. i have been given no info and have only been told to wear support socks and to go back in a month to see if it has helped. i have osteroarthritis and raymauds in my feet. would this have caused it. i really don't know where to go for help/advice

10 Replies

  • i am new to it aswell they are a good lot i have my first appointment at the lymphodema clinic on friday i also have raynaulds in my fingers and toes are you on meds for it as i was on nifidipin and was told to stop them to see if it was them i have been of them for a month and my legs are just the same

  • hi. not taking meds for my reynauds and its quite bad in my toes especially. never been given any meds. i take meds for my cholesterol and high blood pressure. i thought it was the meds i was taking so i stopped them for a while and it made no difference. i have been reffered to a clinic and thankfully its not too far from me. rang them today and they said that as soon as they get the refferal they will call me with an appointment. got fed up with the dr's just fobbing me off.

  • Contact or phone the Lymphoedema Support Group - very helpful crew.

  • thanks. i will

  • I have sent you a private message - check the icons at the top of the page - the little 'bell' will be highlighted.

  • Lymphoedema Support Network. . As well as a website there is a telephone help line .

  • Thanks for that

  • Hi Angie10, Welcome. If you do have Lymphoedema (find someone knowledgeable to advise you - a Lymphoedema therapist or vascular doctor with knowledge), support hose are best prescribed after a course of CDT (that's especially true with stage 2 and 3 Lymphoedema). I doubt that Raynauds and arthritis will cause Lymphoedema. But with the Raynauds, you may have trouble finding comfortable hose to wear. So find a therapist, especially if you have a 'definite' diagnosis - they can teach you so much on self-care and self-management. LSN should be able to advise on clinics or private therapists.

  • hi hun. not had a definite diagnosis yet, its just what the doctor said after loads of tests. have been reffered and rang the clinic yesterday who have not yet had the refferal. they said that as soon as they get it they will ring me to set up an appt/assessment. i've been at my wits end with no-one believing me and one doctor just patted me on the knee and said it's nothing, and another who said it was all in MY HEAD. i think the problem that they (and me) have is that it started same time as my digestive problems and stomach swelling and i think its connected, so don't know what to think. am going for an MRI next month so should know more then

  • All the best with your next tests and getting answers and treatment. Abdominal swelling can be part of Lymphoedema too. Feel free to send questions anytime. Xo

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