I am new to this.

[frustration1954]

Hi everyone,

I am having great trouble with my GP in diagnosing Lymphoedema. Reading some of the posts it is reassuring that I am not on my own. It started in May this year in my left leg foot and ankle. I was given water tablets to take the swelling away but they had no effect. So then a compression stocking which did not help. Test for heart, DVT and now am waiting for kidney and pelvic scan. Everything apart from referral to the Lymphoedema team. One of the GPs even said he was going to refer me (much to my relief) then changed his mind as he did not think it was Lymphoedema.

All my symptoms point to this horrible condition and so in the meantime I am having to suffer with my leg. It is making me so depressed so I am so glad to have found this site which confirms I am not losing my marbles as you all have the same symptoms.

Just need to convince the medical side before I have another bout of cellulitis.

[Mary-intussuception]

How many times have you had Cellulitis?

[frustration1954 in reply to Mary-intussuception]

Hi I have had cellulitis twice now in the same leg

[Mary-intussuception in reply to frustration1954]

Has it been successfully treated?

I would keep going back to GP (go to all of them if you have to).

Cellulitis can be difficult to clear up in people with Lympthoedema. Sometimes regular Antibiotics are prescribed.

Are you under an Orthopaedic Consultant for any reason or a Medical or any Consultant? You can be referred to the Lympthoedema Service by any Consultant or doctor.

Hope you get if soon. xx

[frustration1954 in reply to Mary-intussuception]

Two lot's of antibiotics cleared it up this time for now. Been to three GPs who seem to be doing nothing. Certainly not taking me seriously. Went to two walk in centres who were more help giving me the antibiotics.

Waiting for urgent abdominal scans to eliminate kidney problems. (No problems with kidneys!)

I knew about getting the referral but am now looking at paying privately to see someone.

So desperate with my leg which is not right nothing done since May is a long time.

Just want to know how to deal with it for the best.

[Mary-intussuception in reply to frustration1954]

As you know you need to be seen by Lympthoedema Nurse.

But - though you may be measured for Compression Garments (which will help if you can manage them) and be given cream & shower cream such as Dermol to keep your skin moist so that when it swells and stretches it won't split , be at risk of infection & recurring Cellulitis - there is no total cure. Just management therapies.

Other than these it's a case of keeping the leg / s elevated as much as possible. Gentle exercise such as swimming.

[violetsnowdrop]

In 2010 I had a total knee replacement, after which the swelling on the ankle and shin areas did not go down. After 6 months of my constant pestering of GP (and Orthopaedic Surgeon) and X rays; Vascular ultrasound and MRI I was passed to Vascular Department. The on duty Registrar took one look,carried out Doppler scan and pronounced Lymphoedema but stated I would have to jump through all the rings again to disprove alternative reasons for the problem( i.e. vascular ultrasound,x-rays etc.).

I was then passed to the Lymphoedema Clinic (based in local hospice) where records were checked, measurements were taken for hosiery and couple of exercises shown then immediately discharged to nursing care with GP. The L-clinic only deals with palliative care on a day-to day basis hence being situated in Hospice.

Be a patient patient otherwise the stress will get to you.

[DeborahS32]

It sounds as though you are almost there with checking out alternative reasons for the leg swelling. If the scan and kidney checks are clear, my suggestion is that you insist on a referral to lymphoedema clinic. Use the time until you hear about those checks to thoroughly research what NHS lymphoedema services there are in your area, and make sure that the GP refers you to the correct one.

My experience was that the GP wasn't familiar with it, referred me along the wrong route, as a result of which we wasted a year when I was getting inappropriate treatment. When I did finally get the right referral I asked them to expedite it on the basis that I had already lost at least a year of proper treatment when things had got much worse.

You're doing all the right things in researching the condition and treatments, and you can start right away making sure that you're doing all the skincare etc.

Good luck, and hopefully before long one way and another you'll be on the right track.

[Lynora]

Cellulitis can be the cause of secondary lymphoedema. The LSN have a leaflet about cellulitis, that explains this - you could staple it to your GP’s hand and recommend he studies the RCGP elearning download, about lymphoedema. All part of GP CPD!!!

[frustration1954 in reply to Lynora]

Hi, Thank you for your reply it made me smile all day. All of the replies I have had are reassuring and helpful. Just fed up of the brick walls I keep coming up against with the GPs. I had certainly not realised how difficult it would be to get diagnosed (and still not officially.)

When I suggested lymphoedema to GPs they dismissed it and said it was fluid retention. I wished it was fluid retention then it would have gone by now.

The tightness in my leg and foot is like having constant toothache always there. Then there are the different sensations, feeling like I have walked through a bed of nettles or something cold or hot is running through my veins. Once I take the compression garment off then it aches even worse. At least the compression garment is keeping the swelling at bay for the moment.

One thing my husband has nice soft hands after all the cream he is rubbing in my legs.

Keep smiling.

[Mary-intussuception in reply to frustration1954]

😊

Are you using the Dermol cream x

[AnneBury in reply to Lynora]

Lynora, just a suggestion. When you recommend the LSN please could you spell it out and give the website. Some readers seem to think the Health Unlocked site is the LSN, so clarity is really helpful (I am writing as someone who volunteers for the LSN, Lymphoedema Support Network, lymphoedema.org ) . Many thanks.

[AnneBury]

If you have not already done so have a look at the website of the LSN, Lymphoedema Support Network, lymphoedema.org. They have lots of information and a telephone help line.

[frustration1954 in reply to AnneBury]

Thank you. I have looked at the LSN website which was very helpful also and will be visiting again.

[GabbiD]

So sorry for what you are going through. I also have left leg lymphoedema. Mine is primary and I have never had celluitis. I also did the water pills with no relief except I had to pee all the time. I finally went to my doctor with a print out about Lymphoedema and asked for a referral. Compression stockings are great, but they only hold you at where you are. In my experience if my leg swells I need to wrap it for a few days to get the swelling down and then the compression sock will hold at that size. I used to have the sensation that little men or bugs were running up and down the front of my shins, but that has improved with wrapping/compression and elevation of the leg. The squeaky wheel gets the oil is a saying here in America. So my advice is squeak away until you get the Lymphoedema referral.

[completely-zero654]

Bless you, and no wonder you are a frustrated 1954. I can honestly put hand on heart and say I know exactly what you are going through, and it was not until my lymph nurse wrote a 10 page letter to my g.p about my condition. They messed me around for quite sometime before this. Now they have just about got their heads around it. Keep on at them, download the LSN details and as Lynora once told me "staple it to your g.p.'s hand, but not literally, o.k. !

Take extra special care, and this is the site with dear kind people who will be here ,as we are all going through the same thing xxx