Pain Concern
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Will massage therapy help her to recover?

Hi, my friend Ela used to faint in class very frequently. After fainting several times a day, she lost vision and hearing. Last year during our sports, she fainted during a trial run and her parents noticed it. they took her to many hospitals. Carried out numerous blood tests, MRIs, CAT scans and even going from one cardiologist to other and from neurologists, no one was able to reach a definitive diagnosis. All advised her to drink more water and add salt to diet since her blood pressure was going down. This year the frequency of falling down increased, she remains unconscious for hours and for last two months she is bedridden. She is also experiencing chronic pain now. Eventually, she was diagnosed as with a sympathetic nervous system disorder, which was causing chronic pain and postural orthostatic tachycardia syndrome, an accelerated heart rate condition that triggered by standing up, which was causing her vision and hearing issues, fainting, and fatigue. We are planning to consult a registered massage therapist from a clinic in Mississauga. Will massage therapy help her to walk? Is there any need for approaching Neurologist? Please share your views regarding this disorder.

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Hi I am sorry to hear about your friend and I hope something can help her. I am afraid no one on here can answer your questions as none of us are medical professionals and couldn't even if we were. We are only fellow sufferers.

Why not ask her doctors what they think? Personally I can't see it doing any harm as it's only a massage but don't take my word for it. x

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I think massage might help her to relex but don't believe that it will fix the problem. I'm a PoTS sufferer myself too although I'm not as severely affected.

Are you in the UK? This website might help you to find the help you need potsuk.org, its got lots of information about treatment options, medications and names of doctors that can help. There are also Facebook groups with fellow sufferers who might have more information than some doctors do. It's important to find a cardiologist who got experience dealing with PoTS patients. I hope you find the help you need, don't give up, there is hope out there!!

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Mississauga is in the Greater Toronto area of Ontario, which was my home town. :-)

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Yes a message therapist will help. It will help with reducing muscle shortening that comes from not using the muscles.

Walking requires brain, nerve and muscle coordination. What is preventing this? Walking also requires the input of spinal reflexes to ensure proper muscle tone so that blood does not rush from the head.

Not medical so cannot make any other suggestions.

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Surely the answer as per your last sentence is - I don't know. How does anyone know if it will help. No-one knows is physio will help someone with a simple msk problem let alone anything / much more serious.

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Thanks for the reply. You are right about the answer being don't know. To investigate things one needs background information so you have some clues where to start looking. I tried to provide some. Presenting system background information to a medical consultant can help a medical consultant to give better answers (hopefully not a pipe dream).

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I assume a complete adrenal and hormonal workup has been done. ..

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I am surprised you don't have a physical therapist involved. Massage therapists can loosen the muscles, and may relieve some pain from chronic tightness, but if you want to get her to walk again, I would have thought it would be better to have physio because she will have to systematically build up the strength in her muscles again.

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Muscles are strongest at their longest length. The tighter the muscle the weaker it becomes. Thus a massage therapist can help strengthen muscles by removing chronic tightness.

It can be a catch 22 situation in that to have strength in muscles you have to lose strength. Muscle group strength depends on lots of fibres working. What sometimes happens with physios is that they give the exercises with no investigation into how the patient is using their muscles. Muscle strength can become over contraction of a few muscle fibres producing poor power. This is in contrast to just what is needed contraction of lots of muscle fibres producing lots of power. I know of no physios who check this issue.

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Can you please delete the link of the massage therapist. I feel a lot of your questions should be asked by the patient to her medical professionals.

Why is she bedridden ? There has to be a medical reason why...

Has your friend been seen by a psychologist or psychiatrist to help deal with the situation. It must be absolutely horrific.

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You are right as their needs to be a reason why? However, One needs to work to improve and obtain what ever quality of life you can get. Many medical consultants do not study quality of life issues and would not know of the quality of life improvement that massage therapists can give.

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I know you think very little of medical doctors, but quality of life is one of the biggest decisions when prescribing analgesic medications.

Doctors look at evidence and studies which look at quality of life scores. For instance the drug tapentadol has been proven to improve quality of life, not just reduce pain.

Medicine is studied at Masters level, as medical professionals we know how to scrutinise evidence, and of course keep a breast to developments.

5 years of medical school, 2 years as a foundation doctor, then 3 years as a GP registrar to become a GP - a minimum of 10 years.

A consultant - 5 years medical school, 2 years as a foundation doctor, and 8 years in training to be a consultant. To be a pain consultant not only do they need to become a consultant anaethetist

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Thanks for the reply. Prescribing of analgesic medications is easy. It is a tickbox exercise. Yes you are right about the many years of study. The things that can go wrong are many and it takes years of study to learn what is known about them.

There is quality of life as defined in a medical textbox and there is quality of life as understood by those who live a life that has quality. The two are different. The difference cannot be put in words and as such is missing from the textbooks.

More and more scientific papers are being written on this problem. It is a real issue. A phrase bandied about is evidence based medicine. The trial has been conducted a curve of population response is obtained to the treatment. The medical consultant never bothers to find out where on the population curve of results the patient is.

Just because the treatment works for 50 percent of the population does not mean it will work for 100 per cent of the population.

Symptoms which suggest a diagnosis and thus a treatment for that diagnosis does not imply that a proposed treatment will treat the cause.

See:

april.org.uk/

This may explain the situation better than I can.

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To be completely honest if it’s that bad she needs to be properly admitted to hospital and no amount of people answering in here is going to help as it sounds like she has a lot of quite serious issues going on and most of us aren’t medically trained .

Hope she gets better soon and your a good friend for trying to help x

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A good idea would be to Pop your post up on both 'Thyroid UK' and the PAS 'Pernicious Anemia Society' websites (Here on Health Unlocked.) They are good at many of those symptoms.

How old is your Friend RYIA345 ? Has she recently had the HPV Vaccine (just a thought ?)

Anything to do chronic pain, falling down/walking problems, nervous system, vision, hearing, fainting, fatigue it might be an idea to get vitamin B12 bloods done and thyroid blood panel done if they haven't already been done? Be aware there are 'grey areas' in both these blood result ranges that often gets over looked/missed. The above sites have members that can probably help you forward on these symptoms.

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