An earlier post introduced the Patients Voices meeting we held in London on 11th May 2013. This post shares the notes from the breakout discussion group which looked at managing symptoms.
With many thanks to Group member, Hannah Elbourne, who has kindly typed these up and who also kindly took several lovely photos of this event.
NB: These notes must not be interpreted as medical advice, they are simply things that individuals have tried and found helpful to them if you are experiencing any symptoms which cause you concern - speak to your doctor.
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BTF London volunteer, Theresa, with the Expert Patient Programme course book:
Self Management of Long Term Health Conditions |
Managing Symptoms, Discussion Group Notes:
Everyone in the group explained a bit about who
they are and why they have chosen this particular group to participate in. We went
on to talk in general about coping with having a chronic illness as well as
discussing our perspectives and questions we had on how to spot and manage the emotional,
mental, and physical symptoms related to thyroid disease.
Everyone in the group was hypo rather than hyper,
so this is what we focused on, although it was acknowledged that hyper and hypo
symptoms can be quite similar and difficult to detangle - and also that symptoms can vary from person to person and may not always be down to our thyroid condition as we may also have other things wrong with us.
There were some approaches that came up which people felt help them in
general, and also techniques for coping with specific symptoms.
Common
symptoms and things people in the group said help them:
Muscle
pain/ swelling: especially lack of upper limb
strength makes it difficult even doing simple exercises that use arms or puts
pressure on shoulders:
- Magnesium spray on the
muscles
- Not eating salty foods
- Seeing an osteopath
- Massage therapy (human
contact) – one person goes for a massage and talks through it so it’s like a
two in one therapy session!
Difficulty
sleeping/ insomnia: really need sleep to
be able to function (more than before having thyroid issues) but find it much harder
to get off to sleep, plus wake up a lot more during the night:
- Don’t exercise too
late as the body should be winding down, not up
- Switch off computer/
electronics
- Don’t eat too late
- Try to be in bed early
and at the same time each evening
Immune
system issues: we all seem to catch more colds
and viruses and they seem worse and take a long time to recover from making
life difficult:
- Olive leaf tea
- Echinacea drops
- Vitamin C as it helps to
strengthen the immune system
- We discussed
supplementing separately instead of all in one multivitamins and researching to
find the right products
- Flu jab – this helps
one participant but made another feel very unwell
- Avoid people with
colds like the plague!
Body
temperature: not being able to regulate our temperature,
either too cold or hot, and not being able to cope with being in the sun:
- Exercise helps to
regulate temps
- Wearing layers
Hair
thinning/ falling out: this can be very
upsetting for people:
- Coconut oil to help
dryness
- Trichologist, but expensive
- Not to get upset about
changes in appearance, there is more to you
Fatigue: both physical and mental fatigue can make us feel isolated, disconnected
and depressed and stops people from being able to live their lives:
- Learning to say no and
not take too much on is difficult but important
- 75% rule – trying not
to use all your energy each day, even on good days when you might want to do
lots – factor in rest each day
- Being gentle on
yourself and not beating yourself up when you can’t do so much
- Coming to terms with
the changes and understanding your new boundaries
Anxiety:
as with fatigue this can make us feel isolated and
inhibit our lives and affect our self-esteem.
- Deep breathing and yoga
breathing techniques
- Gentle yoga practice
and other gentle exercise such as Thai Chi and walking
- Meditation
- Being around nice,
genuine, caring people helps!
The above coping techniques for fatigue and anxiety
crossed over a lot and came up a lot with helping to manage thyroid symptoms and
a chronic illness in general.
Nutrition is also big factor in taking control and
managing ourselves but although there are some general points that seem to work
for a lot of people, such as going gluten free sometimes helping with brain fog and
fatigue, or vitamin D and Iron levels needing to be optimal for thyroid to
function well, it is all very confusing. We touched on this briefly but there
is a lot of conflicting information especially as what works for a person with
underactive thyroid doesn’t necessarily work for someone with an overactive
thyroid, or autoimmune thyroid, or for people who do not have a thyroid! [note from Lorraine - we are continuing to seek more information on this subject for group members and will have speakers from the University of Surrey Msc in Nutritional Medicine giving talks in November 2013]
We have all had to make life changes and have to
keep adjusting. The changes in ourselves, our personalities and our constantly
changing boundaries are a struggle to understand and to cope with, not only for
ourselves but also for the people around us.
Support from others is a very important factor for
our wellbeing but it is very difficult for others to understand how
debilitating this illness can be because:
- Symptoms can be so
variable
- It is seen as an
easily treated illness
- So many symptoms are
similar to what people think they can relate to when they are actually very
different i.e. thyroid fatigue is very different from just being tired, or
brain fog is not the same as having a lack of focus.
It would be useful to build a template for how to
explain our symptoms and the things we go through that others don’t see (‘walk
in our shoes’)
We also talked about how it can be difficult to
spot thyroid symptoms as they can be similar/ confused with many other things,
for example problems such as fatigue, depression, and anxiety may or may not
necessarily be because of the thyroid and could be an indicator for something
else. So being around other people with a similar illness can really help with
recognition and understanding of what is happening to us, and although each
person is different there is still a lot of common ground.
I’d like to add and I think others agree that the
events at the Royal Free are very emotional (in a good way!) and informative,
it makes such a huge difference to be around fellow thyroid patients as it can
be such an isolating illness and being able to chat with people in a supportive
environment is a great relief and really helps me to feel less disconnected
from people in general. Thank you!
Other
things that were mentioned in breakout group:
- Heart palpitations – we did talk about this with
anxiety but I think although they can be connected, palpitations are also a
separate issue on their own.
- Not a cure but how to cope for now
- Variability of symptoms limits you
- Alcohol seems to disagree with us
- Blood tests don’t necessarily show how you feel
Other
things that were mentioned, but maybe in wider group
- Time of day for taking thyroid medication vis-à-vis
other pills
- Reducing carbs, esp sugar
- Keep book of successes
- Not the same person as pre-illness
