Anyone with cellulitis does your cellulitis and/or lymphoedema and/or Vasculitis symptoms change throughout day/night and from day-to-day?

hi anyone with cellulitis - I have burning hot thighs, knees, hips, under the breasts/lower back mainly when I lye/sit down in the eve. When i'm walking about through the day it's not so bad. I don't actually have a definite diagnoses as my GP's are indifferent and focus more on saying I'm in the change of life and stressed!! I have a lot going on like definite Raynards , sudden weight loss (1 stone in one month), raised white blood cells, a recently diagnosed rectocele and bacterial vaginal infection but my symptoms of lumpy fluid/tissue moving around my body and burning red rash that comes and goes matches some of the descriptions I've read online but sometimes the rash is bright red other-times it mottled veins that look like chilblains but they are not. My bloods have not been tested for bacterial infection but viral and liver/kidney all come back within the acceptable range. It is difficult to diagnose ones self as there are a number of conditions very similar and I feel the Dr's don't care and won't refer me to someone who might. Does anyone get the same? Does Anyone have cellulits, lymphoedema and Vasculitis?

12 Replies

oldestnewest
  • I have Primary LE in both legs, Raynauds, Chronic venous insufficiency, Erythromelalgia, bad chilblains on my feet (common with Erythromelalgia), and I've had 3 bouts of Cellulitis in the past 12 months. And I'm perimenopausal. Isn't life good! Lol. The burning you describe isn't Cellulitis if it comes and goes depending on day/night or how you're sitting/lying.

    My Lymphie legs do hurt a lot more when I have flares which are triggered by weather ie heat, humidity and barometric pressure changes. Before I cut numerous foods out of my diet (eg wheat, salt, dairy, yeast, alcohol, artificial sweeteners, hot spices, pre-made/ready meals etc) I would have horrendous swelling flares and pain in my legs and feet. It's much better managed since making permanent dietary changes. People including some doctors don't realise how significant food often is in triggering painful flares especially in LE limbs

    Do you have LE? Have you tried manual lymphatic drainage? I have it weekly and complete simple manual drainage twice daily which relieves the unpleasant and painful symptoms in my legs caused by the cocktail of diseases and disorders. I also elevate my legs as much as possible which also provides relief . If you haven't tried eliminating culprit foods from your diet perhaps you might try it for at least 1 month and see if you feel any better x

  • thanks - can you tell me more about lymphatic drainage. I had some deep tissue massage but that made me worse.

  • By the way - lymphatic drainage is a type of light massage (to move the lymph fluid just beneath the skin) - very different to deep tissue.

  • Erythromelalgia - just had a look at this rarediseases.org/rare-disea...

    it says condition get worse in later part of day - mine does but it is always in the morning when i get to see Gp so it doesn't look so bad and I'm not getting taken seriously. Is it the same for you.

  • Erythromelalgia just been looking at this -https://rarediseases.org/rare-diseases/erythromelalgia/

    the condition changes day/night - is this the same for you.

  • It does not depend on day or night, people with EM say EM flare ups are a reaction to sudden changes in temperature ie in winter going from cool outside into a hot heated environment, and the other way around. Within seconds of a rapid temp change the flare up starts -it is intense burning and skin goes extremely red. With feet EM elevation helps relieve it slightly. Night is better for my feet as they are elevated in bed - it's rare I have a night time flare up.

  • Hi Loadsofissues! Sounds like you are having a rough time of it. Cellulitis is usually quite straightforward to diagnose (defined area of redness, which may be spreading, flu-like symptoms, high fever in some, swelling and heat and pain). I'm a lymphoedema therapist. I've had an autoimmune disease in the past which had multiple strange symptoms - when my joints seized up with that, I found a Rheumatologist who diagnosed a rare condition (which thankfully went away!). The doctors would care if they knew what was going on - otherwise, they might just throw their hands up in the air. Who do you see for your Raynauds? Perhaps this doctor might have an idea what is happening with you. I wouldn't start with MLD (manual lymphatic drainage) just yet (although it probaby wouldn't harm you). All the best with finding a doctor who is willing to work with you until you get a half-decent answer and diagnosis/diagnoses. Clare.

  • I don't see anyone for Raynards - like I say the responce I had was there's nothing can be done for Raynards

  • Golly, who are these people you are seeing? Raynauds can be mild or severe. I have it mildly and just ignore it (although I was offered medication for when I had severe pain when breastfeeding - ouch!). Sounds like you are being put in the 'too hard' basket. My advice - do your own research, and if your symptoms are getting worse, keep banging on the door of some reasonably sympathetic doctors who are willing to listen. Of course, there are also alternative health care practitioners - but I'm old-school and still have faith in traditional western medicine. Hopefully your symptoms will die down (after 'the change'). I'm 50 and my body is going through a crazy period of changes - it sux. The sudden weight loss is a concern - keep seeing doctors for that (unless you were intentionally dieting and working out everyday).

  • the dr's are really not concerned about my weight loss now as I have not lost more - I was not doing any diets or exercise to lose weight and I eat more food than before I lost weight as I want a bit of fat to keep me warm!!! but I have not gained and I am an ideal weight now. They just put it down to me coming across as anxious and menopausal. The only thing I'm anxious about is being ill and the way the Gp's roller their eyes at my symptoms.

  • I get red burning patches mainly on knees, thighs - I feel fluid with chains of lumps moving in my hamstrings , IT band down shins, calfs and around knees. The Gp's just think my symptoms are mad. I have had some major attacks with the Raynards which is only in one foot - in January 3 toes tuned blue and the big toe white with an empty blister like look on the tip - I phoned NHS 111 and they said go to A&E but after the 4 1/2 wait to be seen it all looked normal again when I took my warm sock off. The Dr who saw me just said tell your Dr but when I did he just wasn't bothered.

  • I suggest you have a MLD session or two and see how you feel. it's nothing like deep tissue massage - the purpose of MLD is totally different to that of deep tissue which is not recommended for anyone who has Lymphoedema. If you go on MLDUK website you can find a qualified MLD therapist near you

You may also like...