Hello. I was diagnosed with lipedema 4 weeks ago. I have very large upper arms, knees, thighs and bottom, much smaller lower limbs and I am still obese but I have a much smaller upper body I am on a long term weight loss journey, which involves diet and exercise. The thing is that I struggle not to increase weight, let alone lose it and so my diet is quite radical. Im low carb, intermittent fasting on 2 meals a day of which 1 meal is soup. I do an hours Zumba class every morning. I have been living like this for two years and have reduced from 22 stone to 19 stone. I’m on medication for a heart problem which keeps my heart under 60 bpm. Even in hard cardio exercise my heart doesn’t go above 70 bpm. This could be the reason for the constant battle plus I’m just going through the menopause.
The diagnosis has made sense of many things. I can do Zumba, but I can’t go for a walk without being in pain for days and I struggle to get upstairs. This sounds ridiculous but it is entirely true. I can walk around my house but I can’t go for a walk, especially not on uneven ground, but even on the flat these days. I can’t even get to the corner shop. My knees won’t lift me upstairs. Im also struggling to keep on top of sweat rash causing my knees and thighs to seep and bleed. This struggle is getting worse. I’m also concerned that although I have lost weight , my knees and one thigh have increased by about 2 inches each. I use a body scanner at the gym and in many ways this highlights the problem. As I lose weight, I become more and more disproportionate. My lower back is very painful and I can see why - my waist has gone down by 16cm but my bottom hasn’t.
My question is twofold a) I am becoming really upset about this diagnosis and very “ aware” of my lipedema and that many of my problems and pain stem from it. I have a history of difficulties with food and body image which is all coming back to me - I’m struggling to cope mentally basically. I also am struggling to come to terms with the fact that I didn’t cause this by overeating. I have been starving myself for years because of the shame of my size.
And b) I worry that by weight loss I am disabling myself more. Yet I have a heart problem, probably linked to my weight - so I have to lose it. How can I motivate myself to do this exercise and diet when it is potentially going to cause more problems? Because of the Zumba I think, the lipedema on my arms and on one thigh particularly has become very floppy, to the extent that on my right arm it is like I have a bag of fat attached by thin skin to a normal arm. Is this usual?. Are my legs and bottom going to go the same way?
Sorry to be longwinded. You can probably tell I’m quite upset. Thank you for taking the time to read this.
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Rhiannonimity1
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What a message! I am sorry to hear that you feel the feel the way you do. However, what you are describing is typical of lipoedima.
Its difficult to know where to start... Firstly have you got garments (i.e.tights) from your lipoedima clinic? Secondly, are you based near Cardiff/Newport? If so, I can point you in the direction of some Manual Lymph Drainage (MLD) specialists who may be able to help.
Hello. Thank you for your reply. My lipodema clinic asked my doctors for a prescription but they have been delayed and the prescription has not been sent yet. The items are apparently made in Germany and will have a lead time of a couple of weeks. So I will hopefully have them in a month. I’m in the North West , but thank you for your offer of help. Do I need MLD? I don’t know anything about it.I have seen a physiotherapist today who was the first person to be really positive. She thinks the increase in size in my right knee is actually inflammation from my exercise routine and too tight hamstrings - And most importantly is reversible. She is working with me to increase my mobility on the stairs and has stressed that I can amble but must not try to walk ( as in stride) until I have been doing certain exercises for a month or so and then we will reintroduce walking gradually. I had ( on my own) started to do strengthening exercises as well as cardio and tbh that is helping hugely. I feel stronger already.
Perhaps you can tell me - if the compression leggings compress the fat and your actual leg together, what can I use for my arms? My right arm is such a mess. It is as though the fat has detached itself from my arm and is hanging by the skin. It hurts if I bang it or wobble too much. I have tried to bind it, but the binding just rolls up. Sometimes the skin on the fat is very purple through bruising.
Hi, that's no problem, I'm pleased to hear that you had a positive appointment.
The garments I have are made by Medi, which are really good. They compress the leg so the fluid gets released. You are likely to be carrying a lot of fluid, as the lymph system is damaged. Lipoedima is not just about fat but water retention too. MLD will definitely help. Do a search in your local area for a MLD therapist. You will have to pay per session but it will make a difference in reducing the fluid retention.
It sounds like you've been concerned re exercising but perhaps doing the wrong sort. I've got an exercise bike, which I go on most nights, to help with exercise & circulation. There are also plenty of pilates & yoga videos on You Tube you could try. You really do need to be careful with your knees. I've been advised not to run, as it causes issues around the knees.
I take it you've had your legs measured. Why not your arms? There are sleeves available on prescription.
Do chase up your prescription up, you really do need those garments!
Hi. Just read your post from 6 months back. I'm so sorry to read of your distress and challenges. I have been diagnosed with the same issue as well, but on the top of my left arm, right down to the elbow, it looks awful, is painful and has really affected my mental wellbeing. I also have ongoing weight issues, it's a daily 24/7 nightmare as I have 2 heart conditions and 3 stents, plus diabetes . . Just wondered how you are managing?
I've posted a couple of things on this topic, but no replies ??
Would be good to hear from others in similar situations.
Hello Wardija. Thank for your reply. It seems there are not many sufferers on here. It is really difficult to quantify how QOL is affected by lipodema, when you have other conditions. At the moment i am being put under increasing pressure to lose weight for my heart problems despite the lipodema and this is causing great difficulty. I just don’t know how much of me is obesity and how much is lipodema. The lipodema nurse told me that lipodema cells do not attach to the body like fat cells, they only attach to fat cells, so if you reduce the normal fat cells, lipodema hangs off the body in pouches. My lipodema clinic recommend you not to lose weight for this reason. My weight loss doctors don’t recognise lipodema as a condition. It is not a great position to be in. How are you getting on?
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