Hope you've all had a great Christmas and are looking forward to a better year.
I haven't been on here for a while..I've been feeling really down and alone with my Lymphoedema in both feet and legs all the way to the tops of my thighs.
Trying to stay positive but finding footwear a problem...sometimes I'm lucky enough to be able to wear what I want and other times I can't. Going to work and going out with friends is a nightmare...because the weeks before I can wear a favourite pair of wide fitting boots or men's trainers and then when the day comes I can't even get them on...so I can't go to work or I don't go out. I've explained to friends and family and they are just about understanding and realising what I'm experiencing. I would really like to return to the Gym this coming year..to improve my fitness levels...I'm also asthmatic and have been recently been told I also have a heart murmur too. I used to do so much 3-4years ago; Zumba,Tai-bo,running, circuit training,boxercise....now my legs feel so heavy and painful....I really need help on what type exercise and fitness I can and should be doing? I don't want to be a prisoner in my self anymore...my Self esteem and any little confidence I had is gone. I act like I'm okay,but really I'm not....trying to explain to Gym personnel that I have Lymphoedema in my feet and legs and I may need an alternative exercise to do...they look at me like I have two heads. Apologies for the longness of this I guess rant...I just don't know what to do....
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Applekenke172
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Ask your doctor to check out your Thyroid Gland asap.
Ask for: Blood tests as follows:
Thyroid Antibodies TPO and Tg (Thyroid Peroxidase and Thyroglobulin ) these 2 are very important, do insist.
Also TSH, FT3, FT4, T3 and T4.
Also ask for tests to check nutrients levels of :
Vitamin D
Calcium
B12 and Folate
also Ferritin.
You have symptoms of an Underactive Thyroid. Hashimoto's Autoimmune Thyroiditis is the cause of Hypothyroidism in most cases. With Hashimoto's regular Thyroid Function blood tests can fluctuate so vital to have Antibodies tested.
Some of the symptoms of Deficiencies in some of the above nutrients, are similar to Hypothyroidism so PLEASE get everything checked out. ASAP.
Please do NOT start any medication for depression. Get above sorted first.
Are you in UK or USA? Do you attend LympthoedemaClinic? Have you tried Compression Garments?
I eventually got refered by the Orthopaedic department. Had to ask. It was on my second appointment last year. He was glad to help. No one bothered in the past.
Can you phone the Vascular Department 's Secretary and ask about this. You may have to wait a while after the referal.
In my area, when the Lympthoedema Service started, they were only treating Cancer patients. Now they accept patients with Primary Lympthoedema.
There is a lot of ignorance about this condition. I am from England and knew of it because my brother had it about 40 years ago.
Our clinic measure your and give you compression stockings. Also cream and shower cream on presription.
Also ask GP (or Vascular doctor) to for those blood tests I mentioned. You never know . . . . . .
There is a Lymphedema clinic at Meadow House Hospice Ealing Hospital. If you don't have any luck with referral call them direct for advice... ask for Deidre. Best of luck. Let us know how you get on please.
" . . . . . It's important that Lympthoedema is identified and treated as soon as possible.
If it isn't treated, it can get worse. "
Why don't you Google search this,print a copy and show to GP !!!!!?
Have you Googled Hammersmith Lympthoedema Service? There's a lot of information on there. You could phone and ask how long would you wait after referal and how do you go about getting a referal? Tell them what you have written in this post.
Sorry to hear it’s tough for you. I have been living with lymphodema for 5 years. I have and do feel every single thing that you mentioned. Folks that aren’t lymphies can’t ever fully understand how tough it is.
I don’t know if you are on social media but I follow a few lymphodema gals on Instagram - amazing and inspirational . Don’t get me wrong I have had done serious dark days with this but I find their positive energy helps me.
I run and I go to the gym. I used to be frightened of making it worse but exercise helps. I have just finished 4 weeks of multi layer bandaging and I walked 8-10 thousand steps every day. You need to keep moving
If you haven’t been seen by the lymphoedema clinic - who recommended class 4 garments? Are you wearing these on both legs? Have you developed lymphoedema as a result of vascular problems?
Yes I wear them on both legs and if I didn't discover this website I would be none the wiser as to what other options are available to people with Lymphoedema. I've never had any vascular problems. Just complained about my legs and feet being swollen and filled with water causing tightness and feeling heavy for a 3-4 years before GP took it seriously.
If you do manage to get a Lympthoedema Clinic appointment - I would suggest that you don't order the open toe compression garments as I understand that they roll up.
I have both knee high and thigh length stockings. They are not keen on giving the tights as they say they are even more difficult to manage.
I was referred to the Vascular Dept by My GP for further tests after many years of complaints about my legs and feet being swollen and filled with water causing tightness and feeling heavy as well as denting when I pressed on my legs and feet. From the Vascular Dept i had various scans and the one where radioactive fluid is injected between your toes,I can't remember the name of it but it took approximately 3-4 hrs. The results of that scan diagnosed Bilateral Primary Lymphoedema in my feet and legs.
I presume you are local to Hammersmith.? There are s couple of mild therapists in the area if you could afford private to point you in the right direction and show you how to do self massage.
I felt sad reading your post, I suffered with slight lymphoedema following lymph node removal after a melanoma on my leg, I know how much it affected me and my low times even with slight swelling, so how you must be feeling is just awful, I think you've been given great advice, especially with the exercise, even walking quickly rather than running is great for you, ive just got back to running after having the operation linking the veins to the lymphatics to get it draining away, on new years eve I was dancing the night away with my husband, and by the end of the evening my leg was very swollen, but I did leave my stocking off for the first time , by the next day it had gone down, I cant recommend this procedure enough if you are suitable, do you have MLD from a specialist as this really helped me too before the operation, now I just massage my leg myself, very gentle strokes from the ankle upwards, this might help you or get someone in your family to do it, combined with the compression it works. take care and lots of love.
Thank you for your concern and for sharing your condition woes with me.
Thank you for some great advice too about MLD.At present I've not found a MLD Therapist close to me as yet but this weekend I will gather ALL of advice I have received from yourself and from lots of other lovely positive people on this website and start looking into making my life better.
I've asked my GP so many times to refer me to a Lymphoedema clinic but it has fallen on deaf ears. I'm now waiting for my appointment with the Vascular Dept to ask whichever consultant i see to refer me instead...I need help with understanding my Lymphoedema and what I can do to help myself feel better,on SLD massage as well as MLD massage. I've been advised by so many great people on here and I'm very grateful and really appreciate it. I've also watched the suggested YouTube video on SLD but feel I need to be shown by a Lymphoedema nurse/therapist.
What is the Training module? No I'm not a member of LSN just to this website which I found last year August.
I really think membership of LSN is a worthwhile thing to do. They taught me most of what I know . If you can afford £15 a year you'll find it's money well spent.
The newsletters will inform you and then you can take them into your GP practice.
The learning module is for health professionals to learn more about the horrid condition.
There is one for Lipoedema too and both are produced in conjunction with the Royal College of GPs and count towards their yearly learning tariff.
I was depressed too. But I started to do intermittent fasting. This means you go without calories 16-20 hours a day. Then low carb eating. Happy to say that it helps a lot with inflammation and I have lost weight too! Google it. You’ll be glad you did.
You asked about exercise. How do you feel about swimming and walking? Would you be happy to replace the sports and gym work you were doing with these two? Gentle, regular exercise may be better. Building up gradually from 3 x 5 minutes sessions a week, to daily x 30 minutes sessions (depending on how long it's been since you were able to follow your previous regime).
I believe the diagnostic tests you had was a Lymphogram or Lymphangiogram? I remember my late brother having it done approx 40 yrs ago.
Our Lympthoedema Service presrcribes Dermol Cream & Dermol Shower Cream. This is to try to prevent the skin from drying out and itching, & from cracking and weeping when stretched by the swelling. In order to reduce the risk of Cellulitis.
Cellulitis in Lympthoedema affected limbs is very difficult to cure and can lead to long term use of antibiotics to stop it spreading. This is why it is vital that the skin is kept moist, kept from itching - and the swelling addressed.
I think GPS should consider these consequences of refusal to refer to the Lympthoedema Clinic.
Is there a different GP at the practice you could see?
Aveeno is another cream you could try.
I am supposed to use the Dermol at night after removing garments. It can't be applied when wearing the stockings as they fall down, even if using the glue!
It is still trial and error with me. I can't manage the stockings well so am waiting for the delivery of an applicator.
All the best with your next Vascular Clinic appoinment.xx
I'm walking every day,to and from bus stops,getting off 2-4 bus stops before my actual stop. Going for walks as part of a fitness regime. I've also taken up Yoga again.Also my job in a special needs school keeps very active. I will try swimming again,but will need to start taking some Piriton to prepare my skin,the chlorine doesn't agree with my skin.
I know how you feel. It took more than 10 years for me to get a diagnosis. Before that I was given diuretic pills which only made it worse. Now I wear the compression socks and try to walk each day. I do not do it too fast as I have painful swollen knees. Good luck
Yes. The Dermol Shower Cream 250ml is about £5 in Boots so may be a little cheaper elsewhere. But the 500ml Dermol moisturiser which I believe can also be used instead of soap (but I haven't tried) is around £10 to £ 11 on line so I would think it would cost about the same in Pharmacy store.
I bought the Aveeno skin relief nourishing lotion (shea butter) on offer for a few pounds. It absorbed better than the Aveeno oatmeal one which was also very good but just not as absorbent.
My LE clinic recommends Emperderm Onintment 500g Tub looks like Vaseline in a tub very effective and can be used in the shower or bath rub it into your skin 10mins before getting dressed or into shower keeps the skin from drying out but can feel greasy next to clothes so only use a small amount i have tried evering all the creams and this is the best also recommended by Dr
Sorry to hear that you feel like this, I can empathise with you as I felt really down initially. I would suggest seeing a different gp or even moving to a different practice and getting a referral to a lymphoedema clinic ASAP as they can help a lot. Massage and the correct compression can make such a difference and you may find that you are able to be more active again without the pain.
I had to chase up my referral to the clinic as they never sent me an appointment (lack of funding means they don’t have enough appointments) so don’t be afraid to make a few phone calls to give them a nudge!!
I would also suggest taking a copy of your scan report with your diagnosis on when you see the gp and when you see the lymphoedema nurse at the clinic as they can use it to make recommendations for your massage.
Have you rang LSN to find where your nearest clinic is and contact them yourself as I was told this could be an option I fully understand how you are suffering from depression as I do as well I let things get on top of me when I am finding it hardbto cope I rest and pray to God for a better when I have more energy to be able to do things to keep me happy I can not get to the gym so I have an indoor bike which I use I can not walk without discomfort I can not run or jump I do not have the power in my legs to do these things hope you get things sorted
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Feet hell
Is anyone else now feeling fed up of the lock down and totally depressed? 
Newly diagnosed, any advice?
Hand and arm swelling
