I was prompted to write this blog by a posting sometime ago on the TMA community forums on the subject.
When I came out of hospital and rehab, in a wheelchair in September 2008, I had no idea of the additional complications that being in a wheelchair could cause. Naively, I just thought that I'd have my Dermatomyositis and Inclusion Body Myositis, and the other existing conditions, and would now carry on with these, but in a wheelchair. No one had told me about the added complications that could occur if you are in a wheelchair and immobile.
When I first came out of rehab, I was having regular physiotherapy sessions, where they would get me standing up, using a standing frame. However, once they had made the decision that there was not going to be any long-term improvement in my condition, they stopped these sessions. This was the point where everyone started to tell me that I would never stand again.
Shortly after this I had the first sign of the future complications that being in a wheelchair would cause.
This would have been about March or April 2009 - so about 6 months after coming out of rehab. One morning when my carer was getting me up, she noticed that I had a small abrasion on one of my toes. She put a small dressing on it and advised me to call the district nurse, to get it looked at and dressed properly.
Well I thought it was such a small abrasion that it wasn't worth making a fuss about, as it would be cleared up in a couple of days.
After about 10 days, and no improvement, I finally conceded that perhaps it might be best to get it looked at. I called my doctor and he arranged for the district nurse to come and see me, to assess and dress the wound.
The nurse came out the next day, and after looking at it, applied a dressing. She advised that she would put in a prescription for more dressings and call back later in the week.
When the dressings turned up, I thought we must be catering for a small disaster zone. There were different types of dressings, saline and gauze to clean the wound, tape and cream.
Well for about the next 6 to 8 week, the nurse came twice a week to clean and dress the wound. Eventually it healed up, and just as it did, another abrasion opened up on a toe on the other foot.
In total the nurse came to me for about 6 months, twice a week until these small wounds healed up properly. This was a consequence of being in a wheelchair, and not being able to stand and get the fluids moving properly round the body.
During this period, I noticed that the skin on my feet and legs, below the knees, started to become very red. It looked like my legs were very sore, but they weren't.
My legs also started to swell, and during warmer weather, they would ooze a clear liquid. As a consequence they started to need to be dressed, to try to stop the swelling and to help prevent them becoming infected, where they were oozing. I was advised that I should sleep with my feet and legs elevated, to help reduce the swelling.
I also started to get some pain in my legs, usually at night. During the day when I could move my legs, it wasn't rally a problem, but at night, when I can't move, it would keep me awake, until Mum had to come in and move my legs, or massage them.
During this time when the nurse was visiting I was referred to the local Vascular Team, to see if they could help improve the condition of my legs and feet and help with the healing of any future wounds I might get on my feet and toes.
The lead consultant, a lady called Ms Vig, was very nice and very concerned about my legs and feet. She took a lot of trouble examining my legs, and listening to my medical history and how I had become wheelchair bound.
She prescribed some new creams to help improve the condition of the skin, and suggested that I should be admitted into hospital for 3 days to have my legs scanned, and also to have a treatment of a drug called Flolan, which would be administer intravenously over 3 days, and would be used to open up the blood vessels in my legs and feet, and improve circulation..
I was apprehensive about going into hospital, as this would be my first admission to stay, since being in a wheelchair, and I was concerned that being in hospital would be taking me out of my normal comfort zone, and into an environment where my care, beyond what is normally provided in hospital, would be very much outside of my control. I also did not want to stay beyond the 3 days she had outlined, and she assured me that not only would I go to a ward where all her patients go, so she could guarantee my treatment and care, but that everything would be set up so that I had the treatment and scan in the shortest possible time.
So armed with these assurances, I agreed to go in. It was now December 2009.
When I was admitted, it wasn't to the ward Ms Vig had said, as they didn't have a bed there for me. The nurses on the ward didn't seem to know why I was being admitted or which consultant I was under. Worst of all, they didn't seem to know how to cope with someone in a wheelchair.
I won't go into that now, but after 24 hours and not seeing a doctor, having had no treatment, and being treated like I was a nuisance by the nurses, and other patients - who seemed to think that me needing to be hoisted and helped, was just me being lazy - I wanted to go home.
Then I was transferred to the right ward, and everything changed. The nurses were lovely, they listened to me and were very helpful, and the other patients were friendly.
Sadly, the doctor who came to see me, didn't really know why I was there, despite having my notes. I asked to see Ms Vig, but was advised that she had gone on holiday, so I had to explain why I was there.
Later that day we started the Flolan. This was administered slowly. over a long period of time in order to prevent any side effects. I have previously had a drug called Iloprost, which is similar in what it does, but when you are having it you feel nauseous, have headaches and an aching neck, very tired, and in extreme cases you cannot tolerate light. The Iloprost is much more aggressive in the way it acts on the body, which causes these side effects, but also very effective. The Flolan is less aggressive, and therefore there is less likelihood of any side effects, but it can be less effective.
During this treatment and when the 3 days of treatment had finished, I asked about the scan, but nothing seemed to happen. Eventually after being in for over a week, I insisted on seeing the doctor again, who again claimed to know nothing about a scan. After a good deal of shouting on my part, he looked in the notes again, and saw that, yes, I should be having a scan. By this time it was Friday lunchtime, and he said that would not be able to arrange the scan until the following week.
After I had come down off the ceiling, I told him that I had been assured by Ms Vig, that this would all have been done, whilst I was having the Flolan, so that I didn't need to stay in hospital any longer than necessary. I advised him that I saw no reason that he couldn't arrange the scan that afternoon, and that because of his inefficiency, I was now blocking a bed, that could more usefully used for someone who actually needed treatment. If he couldn't arrange the scan, he should be prepared for me to leave, and he could then explain to Ms Vig why I hadn't had the scan as planned.
He went away and 5 minutes later, a nurse came and told me that the scan would happen early in the afternoon. She congratulated me on pushing to get this done.
Well the scan went ahead, but sadly the results were to late coming back to the ward for me to be discharged that evening.
Overnight it had snowed, and was bitterly cold. I was discharged but the nurses wanted to send me home in just a hospital gown. I pointed to the weather outside and asked the senior nurse, how she had been dressed when she came to work in the morning, and whether she had been warm enough. She took my point and got me dressed in my own clothes, before letting the ambulance men take me home.
(I'll just make the point now that I am a great fan of the NHS and all who work in it, but there are occasions when you need to stand up for yourself. I'm lucky that most of my doctors and the nurses who normally look after me, have known me for years, so I am usually spoilt).
I saw Ms Vig again, in an outpatient clinic, and she advised that nothing had come up on the scan to show that there were any vascular issues in my legs. The Flolan, had made little difference to how my legs felt or their condition. As there were no vascular issues, she advised that she would refer me to the Dermatology team.
So from early 2010, I started going to the Dermatology team at my local hospital. This first doctor I saw examined my legs and feet, and prescribed some cream. She admitted that she knew nothing about my conditions, but wasn't really interested in talking to me about them.
I went away and used the creams as advised but these made no difference. In fact the skin just became worse. By this time there was a build up of very dry skin on my legs.
At the Dermatology clinic, seeing the condition of my legs I was told that I couldn't be using the cream properly as prescribed. I assured them I was and was sent home, after being told if I use the creams properly my legs will improve. I was also told that I should sit all day with my legs and feet elevated above my heart.
They just continued to get worse. The dry areas increased in size until they all merged into one large dry area on each leg and foot. In order to stop the swelling, we had started to bandage the legs after applying the cream. Each time these bandages were taken off, a load of dry skin would fall off my legs, and we were left with a pile of skin on the floor.
The next time at Dermatology, I saw a new doctor. She told me that she knew all about my conditions, and that it was not possible for me to have both Dermatomyositis and Inclusion Body Myositis. I must have something else. I asked her what she thought I had, and she could not answer. She examined my legs and prescribed a different set of creams. I asked if compression stockings might be useful, but was ignored.
My legs just got worse. Although the skin wasn't sore, because of all the dry skin and how this kept coming off, the skin below was very delicate and easy to break.
And this is how the pattern of things went on. I would go to Dermatology, and they would scratch their heads, and prescribe different creams. The condition of my legs and feet would continue to deteriorate. I'd periodically ask if compression stockings might help and this was ignored.
Then in later 2011, I was seeing my main consultant, at another hospital, and I asked him to look at my legs and feet. I told him what had been happening and he was appalled, not just by the treatment I had been getting but also at the state of my legs and feet.
He picked up the phone and rang a colleague in Dermatology, to ask if she would see me. She apologised that she could not see me that day, but she could the following day.
I met with Dr Victoria Swale, the following morning. She had seen my notes, and despite there being 5 files of notes, she had read at least a good part of them, because she knew about my history. We discussed the treatment I had been getting and she asked if I had been given a diagnosis. I said that I hadn't.
She then took the dressings off my legs and feet, and as soon as she saw them I could tell by the look on her face she knew what was the problem, and importantly, that she could help.
After examination, she took some of the dry skin off my legs, to be sent for analysis, in case there was any infection present. However, she thought that this was unlikely.
She then advised me that I had Lymphoedema and (Acute on) Chronic Lipodermatosclerosis.
She made a couple of changes to the creams I was using, and how and when these should be applied. She then advised that the real solution to this problem was to get me into compression stockings.
Over the next couple of weeks I had appointments to test the Doppler readings in my feet and ankles, to ensure that there was no damage to the blood vessels, and that there were good pulses in these areas. I also saw the Tissue Viability team, who started to apply pressure bandages, to my legs and feet, in order to build up the tolerance to pressure on the skin on my legs and feet.
The pressure bandages, started off with 2 layers of bandaging building up to 4 layers, to increase the pressure being applied. At the 2 layer level it was no problem, but when we got to the 4 layer level, the pressure was quite a lot, and as I wore the bandages the more they seemed to tighten.
On several occasions the bandages tightened so much that it felt like my legs were being crushed and we actually had to cut the bandages off, as I was in so much pain.
After about 2 months of the pressure bandages, I was then measured up for the compression stockings. These are made-to-measure, specifically for me and for each leg, and are worn to just below my knees. They last for between 4 to 6 months, when they need to be replaced, after having re-measured my legs to take into account any changes in the size of my legs. I wear them each day, but take them off at night. Fortunately I have very good carers who can take them on and off, relatively easily.
Almost as soon as I started wearing the compression stockings there has been a change in my legs. Within 2 months, the legs weren't swelling much, and most of the dry skin was starting to go. Within 6 months, there were only small patches of dry skin, the general colour of the skin on my legs and feet had started to return to something close to normal, and in some areas, the hair started to grow again - a clear sign of healthy skin, and that the fluids are moving normally through the skin and muscles.
Almost 2 years after first wearing the compression stockings, my legs are hugely improved. Standing in my standing wheelchair will also be a factor in helping my legs improve, but without the improvement gained with the compression stockings, I might not have been able to achieve this.
There are two morals to this story.
Firstly, don't neglect your legs and feet, and try to be aware of the additional complications that can come with lack of mobility, and especially with being in a wheelchair. Having sore, tender, painful, uncomfortable legs and feet can make you really unhappy - even when you can't walk. It makes such a difference if they feel better, to how you feel.
And secondly, make sure you see the right person as soon as you can. All the time I was seeing the Dermatology team locally I always thought I was in the wrong place, and not getting the right treatment, but I didn't want to be a nuisance. However as soon as I saw Dr Swale, I knew she was going to help. She knew and understood about my conditions, and most importantly, from almost the first time I saw her, things started to improve.
Lymphoedema
Lymphoedema is a chronic (long-term) condition that causes swelling
in the body's tissue. This can lead to pain and a loss of mobility.
Lymphoedema usually affects the arms or legs, although in some cases there
may be swelling in the:
chest
Lymphoedema is caused by damage or disruption to the lymphatic system.
One function of the lymphatic system is to drain excess fluid from tissues.
If the lymphatic system is disrupted or damaged, it can lose this ability and
the excess fluid will cause the tissue to swell.
Types of lymphoedema
There are two main types of lymphoedema:
- Primary lymphoedema –
which develops at birth or shortly after puberty and is caused by faulty
genes.
- Secondary lymphoedema –
caused by damage to the lymphatic system as a result of an infection,
injury, trauma, or cancer.
Secondary lymphoedema often develops as a side effect of cancer treatment.
Surgery is often necessary to remove lymph glands to prevent a cancer from
spreading, this can damage the lymphatic system.
Radiotherapy, where controlled doses of
high-energy radiation are used to destroy cancer cells, can also damage the
lymphatic system.
Read more about the
causes of lymphoedema.
Who is affected?
It is estimated that 1 in 10,000 people are affected by primary
lymphoedema.
Secondary lymphoedema is a relatively common condition, affecting an
estimated 100,000 people in the UK.
Secondary lymphoedema occurs more frequently in women, possibly because it
can sometimes be a side effect of
breast cancer treatment.
Cancer Research UK estimates than one in
five women may have lymphoedema in their arm after they have had radiotherapy or
lymph nodes removed to treat breast cancer.
If you are at risk of developing lymphoedema due to cancer treatment, you may
be offered an assessment as part of your aftercare. Read more about
how lymphoedema is diagnosed.
Treating lymphoedema
There is no cure for lymphoedema, but it is possible to control the symptoms
using a combination of different techniques, such as massage and compression
garments.
There are also things you can do to help prevent the condition getting worse.
This includes taking care of your skin to avoid infection and having a healthy
diet and lifestyle.
If you have received treatment for cancer, these measures may also help to
prevent lymphoedema.
Read more about
how lymphoedema is treated and
preventing lymphoedema.
Complications
People with lymphoedema are more vulnerable to infection. This is because
infection-fighting white blood cells, called lymphocytes, which travel in the
lymphatic system, are prevented from reaching the part of the body where they
are needed.
A bacterial infection of the skin called
cellulitis is one of the most commonly
reported infections in people with lymphoedema.
Read more about
complications of lymphoedema
Lipodermatosclerosis
In some people, the area becomes red and inflamed and can be painful. This problem is called lipodermatosclerosis.
The symptoms of lipodermatosclerosis include:
- hard, tight skin
- red- or brown-coloured skin
- the layer of fat and soft tissues underneath the skin (subcutaneous tissue) may become hard, causing the leg to look like an upside-down champagne bottle
Treatment
Options may include:
There are also some self-help techniques that you can try. These treatment
options are described in more detail below.
If you have
varicose veins, graduated elastic medical
compression stockings will often help to treat these as well. However, in some
cases surgery may be necessary.
Lipodermatosclerosis (hardened, tight skin) is treated the same way as
varicose eczema. If you have a venous leg ulcer, you can also read information
about
treating venous leg ulcers.
Self-help
There are some steps you can take to care for your varicose eczema:
- avoid injuring your skin – for example, by knocking into a
chair, as this could lead to an ulcer (open sore) developing
- raise your legs when you are resting – for example, by
propping up your feet on some pillows to help reduce swelling
- keep physically active – this will improve your circulation
and help you maintain a healthy weight
Exercise
Fluid builds up in the lower legs if you sit or stand for too long, so it is
important to keep moving. Walking will get your muscles working and help to push
the blood through the veins to your heart. The
National Eczema Society also
recommends:
- flexing your feet regularly
- rising up onto your toes or bending down at the knees
Emollients
Emollients are substances that help to soften and smooth your skin to keep it
supple and moist. They are one of the most important forms of treatment for all
types of eczema.
As varicose eczema can cause your skin to become dry and cracked, it is
important to keep it moisturised to prevent further irritation. Emollients
prevent water being lost from the outer layer of skin (epidermis), as well as
adding water to the skin. They act as a protective barrier to keep moisture in
and irritants out.
Choice of emollient
A number of different emollients are available. Some can be bought over the
counter without a prescription, but if you have varicose eczema ask your GP to
recommend a suitable product.
You may need to try several different emollients to find one that works for
you. You may also be prescribed a mixture of emollients. For example:
- an ointment for very dry skin
- a cream or lotion for less dry skin
- an emollient to use instead of soap
- an emollient to add to bath water or use in the shower
The difference between lotions, creams and ointments is the amount of oil
that they contain. Ointments contain the most oil so they can be quite greasy,
but are the most effective at keeping moisture in the skin. Lotions contain the
least amount of oil so are not greasy, but can be less effective. Creams are
somewhere in between.
If you have been using a particular emollient for some time, it may
eventually become less effective or may start to irritate your skin. If this is
the case, your GP will be able to prescribe another product.
How to use emollients
If you have varicose eczema, you should use an emollient all the time, even
if you do not have any symptoms.
To apply the emollient:
- use a large amount
- smooth it into the skin in the same direction that the hair grows
- do not rub it in
- apply every two to three hours for very dry skin
- after a bath or shower, gently dry the skin, then immediately apply the
emollient while the skin is still moist
- do not share emollients with other people
Creams and lotions tend to be more suitable for red, inflamed (swollen) areas
of skin. Ointments are more suitable for areas of dry skin that are not
inflamed.
It is very important to keep using emollients during a flare-up of varicose
eczema, because this is when the skin needs the most moisture. Apply emollients
frequently and in generous amounts during a flare-up.
Side effects
The most common side effect of using emollients is a rash. If you have
varicose eczema, your skin is sensitive and can sometimes react to certain
ingredients in an emollient. If this happens, speak to your GP, who can
prescribe an alternative product.
Be aware some emollients contain paraffin and can be a fire hazard. As some
emollient products are highly flammable, do not use them near a naked flame.
Emollients added to bath water can make your bath very slippery, so take care
getting in and out of the bath.
Topical corticosteroids
If your skin is red and inflamed from a flare-up of varicose eczema, your GP
may prescribe a topical corticosteroid (one that is applied directly to your
skin). Corticosteroids work by quickly reducing inflammation.
Corticosteroids are any type of medication that contain steroids, a type of
hormone.
Choice of topical corticosteroid
Different strength topical corticosteroids can be prescribed depending on the
severity of your varicose eczema. If you have flare-ups of lipodermatosclerosis,
you may need a very strong topical corticosteroid. Therefore you may be
prescribed a cream or an ointment.
If your varicose eczema is moderate to severe, you may need to apply topical
corticosteroids both between flare-ups and during them.
If you need to use corticosteroids frequently, visit your GP regularly so
they can check that the treatment is working.
How to use topical corticosteroids
When using corticosteroids, apply the treatment sparingly to the affected
areas. Always follow directions on the patient information leaflet that comes
with the corticosteroid, as it provides details about how much to apply.
During a flare-up of varicose eczema, do not apply the corticosteroid more
than twice a day. Most people only have to apply it once a day. When applying
the topical corticosteroid, you should:
- apply your emollient first and wait several minutes before applying the
topical corticosteroid (until the emollient has soaked into your skin)
- apply a small amount of the topical corticosteroid to the affected area
- use the topical corticosteroid for seven to 14 days
- continue to apply the treatment for 48 hours after the flare-up has cleared
If you are using corticosteroids on a long-term basis, you may be able to
apply them less frequently. Your GP will advise you about how often you should
be applying them.
Also speak to your GP if you have been using a topical corticosteroid and
your symptoms have not improved.
How much topical corticosteroid to use
- topical corticosteroids are measured in a standard unit called the fingertip
unit (FTU)
- one FTU is the amount of topical steroid squeezed along an adult's fingertip
- one FTU is enough to treat an area of skin twice the size of an adult's hand
Read more information about
fingertip units and dosage of topical
corticosteroids.
Side effects
Topical corticosteroids may cause a mild burning or stinging sensation as you
apply them. In some areas, they may also cause:
- thinning of the skin, particularly in the crease of your knee joint
- telangiectasia (visible blood vessels), particularly on the cheeks
- acne (spots)
- increased hair growth
Generally, using a stronger topical corticosteroid or using a large amount of
topical corticosteroid will increase your risk of getting side effects. For this
reason, you should use the weakest and smallest amount possible to control your
symptoms.
