Sjogren's Patient Stories

We are looking to present stories from Sjogrens Syndrome patients to illustrate just how this illness can effect  everyday life.  All published stories can either be anonymous or use a psudonym / pen name.

Many Thanks

 

The Cambridgeshire Support Group of the BSSA has been so valuable in helping me in coping with the difficulties of living with Sjogrens Syndrome.

 

Regular opportunities to meet with fellow patients and learn more about my condition has been so valuable.

 

Many thanks to Carol and Henrietta for starting the group and their tireless work to run the group, promote and raise awareness, at the same time as suffering with the illness deserves our  recognition and sincere thanks.

 

Many thanks for all your efforts, keep up the good work -it has not gone unnoticed

 

 

Anon Member

March 2018

Secondary to What?

 

I clearly remember the difficulties living with Sjogrens Syndrome over twenty years ago, long before it was ever diagnosed.  Excessive pains in the wrists, elbows, shoulders, hands, fingers on both arms.  Chronic fatigue that guaranteed crashing out for hours  on end and taking hours to come round and wake up properly.

 

My local GP at the time was a traditional old school GP who arranged tests for arthritis at my local hospital.  He was really pleased to be able to inform me that I did not have arthritis, but was unable to help any further.

 

As my then unknown condition deteriorated, I enquired about a referral to a specialist and was informed that it would take many months, on enquiring about going private I was given an appointment within days.  I can remember little of value came from this appointment and was told “You just have a virus, it should be gone by Christmas”,  and your bill will be a few hundred pounds.  This was my first contact with excessive greed and high levels of incompetence within some areas of the medical profession.  On leaving the specialist suggested to me,  you may like to see a colleague of his who was a rheumatologist.

 

After a few appointments the rhumatologist, who was stabbing around in roughly the right area, suggested that he would refer me to Addenbrooke’s Hospital in Cambridge as they liked looking at more complex conditions and had more time to devote to complex cases!

 

Within a few weeks I had an initial appointment with Dr. Hazlemann at his rheumatology outpatients clinic and was told to arrange for a one week stay for tests and evaluation to try to establish what my actual condition was.   On my last day in hospital I was sent to the Dental Clinic for a biopsy.  As soon as the tests were completed the dental specialist advised me,  “You have Secondary Sjogrens Syndrome!”,  My immediate reply was “Secondary to What?”.   

 

I never really found out what my condition was actually secondary to, until this year  some seventeen years later!,   Various slapdash medical reports referred to my having both Primary and Secondary Sjogrens Syndrome, highlighting a distinct absence of knowledge from those medical professionals who referred to the wrong condition and not the one which was diagnosed!

 

It would have been really valuable to have access to something akin to the Sjogrens Cambs website and BSSA information, but I had to grope around in the dark for ages before fully understanding the difference between Primary and Secondary Sjogrens Syndrome.

 

“Borderer”    Jan 2018

 

Skin Problems and Sjogrens

 

Personal experiences and comparisons

 

 After many years of skin problems,dryness, itching, pain and sores caused my Sjogrens Syndrome with no results from various prescribed skin creams and metro-gel which just peeled off masses of dead skin but did little more than this..  My experience was rapid discharge from one very large Cambridgeshire hospital’s dermatology clinic and another where a consultant told me there was nothing that could be done and he knew as he suffered the same condition.  

 

We have to ask if it is NHS Policy to prematurely discharge “patients from clinics” to save money?.

 

My lower legs and feet had been a problem since about 2001which led to Cellulitis and Phlebitis, My lower legs swelled up massively and  uncontrollably leading to a two year period when I was unable to wear any shoes.  The problem was ignored by my then GP  despite repeated requests for help.  Sometime thereafter two practice nurses decided to experiment with dressings to draw out fluid from the damaged legs.  This worked and here qualified doctors ignored the problem and nursing staff had the knowledge and ability to alleviate the worst of the problem.

 

A few years later my skin remained very dark, dangerous levels of water were being retained on the lungs.  This led to a series of pulmonary embolism on my left lung which appears to have originated within the medically ignored lower legs.

 

I subsequently moved from the UK to Dusseldorf and have noted a very different approach to treating dermatological problems between the UK and German medical services. 

 

I attended three  special clinics in the city, a Nurology clinic deals with alleviating the loss of feeling in the damaged feet and damaged lower legs by medication. 

 

 A Dermatology clinic deals with the severe problems of dry dead skin which was increasingly covering large areas of my face.  One which I was told was incurable in Cambridgeshire,  I was advised in Germany that the condition could lead to skin cancer if untreated, a biopsy confirmed that it was not cancerous at this stage and a few weeks ago I was prescribed Solacutan Gel (very strong for adult use only) applied twice per day, treated in accord with the advice set out in Prof Steinkraus  article.  For the first time I am now able to note progress on a daily basis.  When I asked about the skin creams I had been prescribed in the UK, the doctor checked medication data on his computer and I was told that they would not do me any harm, but would not do me any good either (in line with my practical experience of their usage)

 

Thirdly I attend a a specialist Phlebologie Clinic who deal with skin problems related to damaged nerve endings in my lower legs and feet.This is being treated with specially made to measure soft touch support stockings so as to minimize damage to wafer thin skin. During the evenings I have to apply  a special thick sticky skin cream called  Body Butter (Available from Chemists, and Supermarkets as a staple product here.  An internet check appears that many such products in the UK are sold a fragrant luxury items with prices to match-  Check the internet)  and this works.  Spontaneous bleeding due to the skin of my lower legs splitting and a long recovery time for the wounds to heal is now a rare event as the skin is slowly but surely  improving.

 

This is an area of medical care that could improve vastly in the UK, Is the problem one of a need for more knowledge, Rapid “Lick Stick and Run” consultations, the quality of medication approved for use by the NHS, A need to prematurely discharge patients from Hospital Outpatient clinics.

I would not have believed the vast difference in treating skin problems that exist in two very similar European Countries without personally experiencing  treatment differences over years.

 

Ed.  2018

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© Carol Burns