As 2015 draws to a close, PhysioPod invited Jill, aged 74 to share her story of how Lipoedema has affected her life since the age of 12 and the years of being told to lose weight which made no difference to her condition. After finally receiving a correct diagnosis in 2012, Jill has made new lifestyle choices and received effective non invasive treatments. With the support of Talk Lipoedema, there is no stopping her as she shares her ultimate goal for 2016! Thank you so much Jill. x
The ‘early years’ - learning to cope with the name-calling and the endless diets
At the age of 12, I began to gain weight on my legs and hips, and at school I became known as ‘blubber legs”. Obviously this was very distressing but I learned to cope with the name-calling. My mother put me on a diet, but in those days there was little knowledge of diets, as we know them today. Of course this didn't work and my legs just got bigger. I also began to suffer pain and thought everyone had painful legs. My Grandmother on my Fathers side had very large painful legs and flinched if we touched them, so I thought this was the norm. By the age of 14, my thighs rubbed together so much that they became excoriated and bled. My Mum used to put Snowfire on them, which smelt awful and didn't work. Walking was a nightmare.
From being given a six months ward trial to best awarded ‘All-round Nurse prize” and to delivering 2800 babies
I was determined to become a Nurse and applied at the local college to do a pre-nursing course, which I completed and then applied at Preston Royal Infirmary to become a State Registered Nurse (SRN). The Matron was convinced I wouldn't be able to cope with the busy wards so put me on a six-month trial. I am a very strong, determined person so was convinced I would finish the course and so I did. I actually won the best all-round Nurse prize, much to my Mums delight. Following this I then did midwifery training in London and Oxford and remained in Oxford as a Community Midwife for 11 years. I met and married my wonderful husband David, who wasn't phased by my legs and we went on to have two beautiful boys. I transferred after my eldest was born to the John Radcliffe Hospital where I worked with high-risk mothers for 27 years. In my time as a Midwife, I delivered 2800 babies, the eldest of those now 52 and many of those babies I delivered now have grandchildren of their own! It was a long, happy and very rewarding career.
The onset of ill health, followed by the correct diagnosis of Stage 4-5 Lipoedema; some 60 years after it developed
Unfortunately, in 2003, I had a stroke, which rendered me unable to work, so I retired in 2004, after a year off sick. Apparently my diabetes had brought on the stroke and an inappropriate diet advised by Doctors. Over the years, I had been given so many diet sheets I could have papered the walls with them and they were all useless. I was fairly sedentary after the stroke and gained a lot of weight. We moved to a bungalow in Norfolk, as I couldn't by then walk up the stairs. It was in Norfolk in 2012 that I was diagnosed with Lipoedema by my Lymphoedema Nurse which was confirmed by my GP. I had never heard of Lipoedema and few doctors knew/know anything about it. Apparently I am Stage 4 to 5, which is very advanced.
Talk Lipoedema – Help was at hand and so gratefully received
After diagnosis, I joined a Facebook group called Talk Lipoedema and this group has been my Lifeline. I have met so many wonderfully supportive ladies, all sharing our experiences of this under-diagnosed disease. It was through this group that I attended a Lipoedema conference in Birmingham and was lucky to be picked for the fashion show which was organized by Cara Jones a trustee of Talk Lipoedema and Nina Blakemore the TV presenter and plus size model (herself a lipoedema sufferer) - it was great fun. At the Conference, I met Mary and Julie of PhysioPod fame. Over dinner we discussed many things, and they chatted about how Deep Oscillation and of the relief it can provide with pain, swelling and bruising and as the pain in my by now, extremely large legs was getting so much worse, we arranged for them to visit me in my home later in the year.
Taking Control: A New Lifestyle – A New Me!
Meanwhile, after much help and discussion with members of Talk Lipoedema and with advice from Lynn Chattam, a fellow member (and now a great friend), I adopted a Low Carbohydrate/High Fat way of eating and in two years, I have lost 108 lbs in total, improving my diabetes, reducing my blood sugars and my insulin doses. Mary at PhysioPod asked if Lynn would like to comment on this, she said: "I had been low carbing very successfully for some years when Jill asked me about it. I pointed her in the direction of 'The Diet Doctor', which fully explains the science behind the low carb, high fat way of life. It worked wonders for her and she looks amazing. I can't take any credit however, as I merely pointed Jill in the direction. She is a very focused and determined lady and I applaud her for her dedication"
Daily Routines that help with my Lipoedema
Gradually, with the help of my carer, I have now increased my walking distance in the neighbourhood. I take a multi-vitamin daily, I dry brush daily and I use a vibro plate for ten minutes twice a day. My lymphoedema nurse is brilliant and I see her every six months. She comes to my home and I get measured for my new compression. I get two pairs of thigh highs and two pairs of arm compression twice a year, either beige or black made by Mediven. I treat my skin with Aqueous cream three times a week. There are a lot of supplements advised for Lipoedema but I can't take them as I'm on anticoagulants. I haven’t tried MLD as there isn’t a therapist near to me but I am hopeful there will be soon in Great Yarmouth. I also haven’t tried kinesio taping or lymphatic yoga but I know some ladies find this helpful too.
After several months of researching online, chatting to others and both email and telephone conversing with Mary and Julie of PhysioPod they came to visit us at home and did a long demonstration on both David and myself, giving us guidance on using the unit - which is a simple and well put together device (we also had a lot of fun in the process too!). David has Osteopaenia and four fractured lumbar vertebrae, which have crushed downwards. There is nothing surgically they can do. He has calcium and Alendronic acid to strengthen his skeleton and some painkillers, however he had a bad fall in January 2015 due to the strong analgesia he was on, so now only takes Paracetamol.
The PhysioPod, which we purchased, is the best thing ever. I use it every other day, mostly on my legs with the extra long handles we purchased; it really helps the pain in my legs and on my arms too, which now have Lipoedema.
Deep Oscillation has also been helpful in other areas for me:
• Dercums tumours (non-malignant lipomas which are fatty tissue with multiple blood vessels, which get very painful sometimes)
• A dislocated thumb - which was swollen, bruised and painful
• A painful frozen shoulder
I continue to use Deep Oscillation on David’s back and the back pain has improved and his walking is definitely much better. As both my husband and I are in our seventies any help we can get to relieve our pain is gratefully received.
I like the tingling sensation when using the PhysioPod as its very soothing, especially on the tight painful areas and on the lipomas. Afterwards my skin feels less tight and the pain in the lipomas is less for a couple of hours. My joins feel more comfortable and it seems the joints are less hyper-mobile. I haven't had so many thumb dislocations either since using the PhysioPod on them. (I have hyper mobile thumbs, which can dislocate easily).
Moving forward and promoting awareness
My Lipoedema is at an advanced stage because of lack of knowledge, so if my story can help the medical profession realise that losing weight will not reduce Lipoedema, then I will be happy to have done a little to spread awareness of this chronic condition and the help that is out there.
Walking is progressing well too since the PhysioPod but I haven't quite made my goal of half a mile yet! This will be like a marathon to me and is on my to-do list for 2016…
Happy New Year Everyone!
What is Lipoedema?
Lipoedema (NOT Lymphoedema) is a chronic, hereditary and genetic disorder of the adipose tissue (or body fat) which can be both disfiguring and painful. It predominantly affects women (although men can also suffer) from the age of puberty and beyond. Sufferers may have a normal slim (upper) body shape but a much larger disproportionate lower body below the waist without changes made to diet or exercise regime, in some cases, upper arms are effected too. As Lipoedema progresses, additional, expanding fat cells interfere with the pathways of lymphatic vessels and sufferers can develop secondary Lymphoedema and it then becomes known as Lipo-Lymphoedema. The effects of Lipoedema on the patient can also cause great psychological distress for the sufferer. It is very important for people with lipoedema to eat a healthy diet and follow a programme of low impact exercises such as swimming, walking or cycling.
PhysioPod™ UK Ltd exhibited DEEP OSCILLATION® at the TALK Lipoedema Spring Conference 2015 - click here to read more
The lovely Jill, an inspiration, friend and truly remarkable lady. After a lipoedema diagnosis in 2012, Jill finally managed to get the right kind of help with compression, diet, skin care and exercise and support from Talk Lipoedema. After researching, Jill, a retired Midwife also decided to invest in Deep Oscillation. The combination of these factors has helped and Jill wants to share her story in the hope that medical professionals will take note and sufferers who do not know they have it get an early diagnosis and referral for treatment and support.
TALK Lipoedema are a non-profit making organization working to support, advocate and educate on Lipoedema. Jill has received tremendous support in the group and says it has been her "lifeline"
Jill pictured centre (seated) at the Talk Lipoedema Spring Conference 2015 Fashion Show
Nina Blakemore, Plus size model, TV presenter and Lipoedema sufferer, hosted and helped ladies to prepare for the fashion show, the event and Conference was a huge success.
Jill had dinner with Mary and Julie of PhysioPod at the Talk Lipoedema Fashion Show and Gala Dinner, where they talked of everything from delivering 2800 babies to sharing the odd joke or two!
Acknowledgment from Dr Karen Herbst of DEEP OSCILLATION® - HIVAMAT® 200 in Lipoedema management PhysioPod® were delighted to note that Dr Karen Herbst, keynote speaker at the Conference, acknowledged in her presentations to both medical professionals and Lipoedema sufferers that DEEP OSCILLATION®/HIVAMAT® 200 treatments are helpful for improving tissue after Lipoedema diagnosis.
Clinically Proven Physiological Effects of DEEP OSCILLATION® Highly effective in reducing pain, Anti-inflammatory, Effective in reabsorbing oedema, Promotes wound healing, Anti-fibrotic Improves trophicity, Rubor reduction, Detoxification, Improving the quality of tissue
The DEEP OSCILLATION® PERSONAL used, where appropriate, for the management of Lipoedema and Lipo-Lymphoedema
Jill and Julie Sorocozyn, pictured at Jill's home. Jill and husband David enjoyed a DEEP OSCILLATION treatment before going through the workings of the DEEP OSCILLATION Personal (aka the PhysioPod)
Mary and Julie of PhysioPod concluded their afternoon with Jill & David with a lovely stay over in nearby Great Yarmouth.