Trying to get diagnosed but need help!

[Anna_1622]

I'm 29 years old and have noticed every since puberty my calves have been getting bigger. It hasn't bothered me that much up until recently as I have tried to loose weight with very little actually coming off my lower half, which is depressing!

I have been reading up on this for a while now and decided today to go and discuss this with my GP as it is scary as to what it could turn into, left untreated. So I asked my GP and his response was 'yes you do have it however there is nothing we can do for it'. GREAT! make me feel even worse - is what i thought.

I think I am in the early stages so I am keen to get treated with compression bandages and get some help with diet and exercise. I live in the West Midlands of the UK and wondered if anyone can give me advice on where to go next? considering my GP doesn't want to know basically.

Any advice would be greatly appreciated.

[Whitesugar]

Ask the Lymphoedema Support Network for their list of clinics and then have a chat with the closest for their advice on referral. If you do have a problem with Lymphoedema or Lipoedema it is important to start wearing compression hosiery to avoid the situation getting worse. Well done for recognising that you need help and good luck.

[Lynora]

Has the GP said it could be Lymphoedema or Lipoedema? LSN can tell you where clinics are available. You could also have a look at lipoedema.co.uk

[CCT67]

Hello

I'm sorry to hear of your difficulties.

I woudn't leave it to your GP to diagnos what might be Lymphoedema in your limbs. In light of doctors in the UK receiving less than 30 minutes of training on the body's Lymphatics during their medical training,a GP is not qualified or sufficiently knowledgable/trained to know how to assess/diagnose Lymphoedema (LE).

Since your GP thinks you have LE, I would suggest you ask your GP to refer you to the nearest Lymphoedema Clinic. Most of these are connected with cancer hospices because so many cancer patients have LE post-cancer treatment. The LE specialist nurse at the clinic will be more sufficiently trained than GPs to determine whether your presenting symptoms and history are indicative of LE, and they can discuss the treatment/limb maintaince options with you (eg manual lymphatic drainage/MLD, compression therapy etc). If they do assess you to have LE then they will also discuss the strict skin-care regime you should follow since Cellulitis (bacterial skin infection that Lymphies are at high risk of) can result in hospitalisation. I'm sorry to say that there is no known cure for LE, not yet. There are experimental surgeries now being conducted in the UK but they do not cure the disease, only reduce symptoms (this is only In some patients).

While diet is in no way linked to anyone developing LE, many of us with the disease find that our oedema/swelling can be exacerbated by various food/alcohol/activities/hot temperatures and humidity.. Generally, salt/sodium is advised to be limited due to the additional swelling it causes. Unfortunately, changing your diet will not reduce the size of your legs if you do in fact have LE. We Lymphies are all hugely conscious of our large limb/s and this can affect our self-esteem in many ways, especially when the large limbs covered in compression garments result in people staring or making comments in public. You are not alone though! All of us with the disease rally around to support each other as best we can.

In addition to the local LE clinic, your GP can also refer you to the LE Clinic at St Georges Hospital in London where the only LE specialist team in the UK is located - this is a multidisciplinary team and where the UK Lymphoedma guru Professor Mortimer is based. There is a wait list for this clinic so I suggest you get your GP to refer you ASAP in light of the wait you will have.

I'm sure others on this site will give helpful advice in addition to me!

Take care

Cat

[Whitesugar in reply to CCT67]

Just to note. St George's do not take referrals from GPs unless the patient lives in the Wandsworth area. Referrals only from other NHS Lymphoedema Clinics or consultants.

[Hidden]

You may find it difficult to get treatment on the NHS and most GP practices do not have access to a service unless it is secondary to cancer. It isn't that your GP isn't interested, more that there is little he can do. You have done well to recognise it, now you will need to be proactive to get advice on management. He was, however, wrong on the "nothing" - compression stockings are the way forwards.

[AnneBury]

As others have said contact the Lymphoedema Support Network lymphoedema.org. As well as their website they have a telephone help line (phone number on website).

[DebiMcC]

Hi Anna

Welcome to the land of lymphies

I agree with absolutely everything that has been said in the previous posts. Although I have found that eating a healthy well balanced diet and exercising regularly will help, not saying I always practice what I preach.

Elevate your legs when sitting down I.e. - on the sofa - swing your legs up - this die amaze a difference.

Compression stockings will rock your world.

Lymphatic massage helps also bit only from someone who knows what they are doing

Well done so far & good luck to you Debi

[Snaomi]

So sorry that you may have this desease. My first recommendation would be to see if you can get a lyphomoscintograpy to show where you may or may not have blocked lymph nodes.

Secondly, find a good therapist specializing in lymphedema assuming that is definately what it is and start learning the massages and wearing stockings regularly. Excercise is good especially swimming. Cut salt from your diet. Listen to your body and if you need to rest then do so as this can cause fatique. Wish I would have known some basic steps when I first got it. The thing I have really learned is it is up to you to be proactive and find out what steps to take as patients are educating the doctors. Best of luck to you.

[Snaomi]

You might also ask for a pump.

[Hidden]

Not sure where you are in the A. Midlands but I go to a very good l lymphoedema clinic at Warwick. Best to try LSN first as mentioned by various people. Good luck in your search and let us know how you get on x