Sticky Blood-Hughes Syndrome Support

Chronic Pain

Hi All,

Been searching and i know some of you been talking about pain managment etc and i rembered this article was some help so some people on the APLSUK site please take it as an article of information it may be useful it may not but thought you would like to read it.


Pain Free Exercise?!

I can't Imagine!


experienced - chronic pain is a debilitating condition that affects a person's lifestyle by

limiting their ability to perform daily behaviors and to participate in activities

they enjoy The individual will often get caught in a vicious cycle of pain leading

to inactivity; inactivity leading to deconditioning, and deconditioning leading to

progressively increased stress on the body and more pain. As you can only imagine this

takes a toll on the individual both physically and psychologically.

The good new is there are conservative alternatives to medication and pain injections.

Regular exercise is one form of treatment that has been proven time and time again to have a positive

effect on individuals suffering from chronic pain, particularly if the source of the

pain is from Fibromyalgia syndrome or Arthritis. Now, those of you who suffer from chronic pain,

I know what you are thinking. "How do you expect me to exercise when I am in this

much pain?" My answer is, imagine an environment where you are weightless,

warm, and pain free. Sounds good, doesn't it? Now imaging not needing an assistive

device to walk around. Imagine that instead of cringing in pain as you reach for that

object on the top shelf; that your arm actually floats right up to grasp it. Imagine

coming up from a deep squat without a groan. Imagine bounding up the steps like

a child. Sounds like an interesting place, doesn't it? The good new is that place is

not an Imaginary land where you can never gain entry That place actually exists in

water. Water has a number of qualities that assist in diminishing pain, all the while

building strong muscles and establishing pain free joints to help us get around in our

world. The buoyancy of water allows us to be weightless, or any variation there of; thus

exerting a minimal amount of compression on our joints. To clarify; if you stand waist

high in water, you are experiencing half of your normal body weight. If you stand

neck deep you are only 10% of your normal body weight and if you are suspended,

you are experiencing weightlessness. Water also provides the static pressure, which is

actually a circumferential force similar to panty hose or compression hose - only

without the struggle of putting them on and off This circumferential force whorls

to increase circulation back to the core of the body and decrease swelling in the lower

extremities. This is important because inactivity and deconditioning of the body's

muscular structures can increase pain due to poor circulation or stagnant fluid

collecting around muscles and joints Water also provides a natural resistance to

our movements in the form of viscosity, turbulence and surface tension. The

viscosity of water provides resistance 12 times that of air.

You are able to improve muscle tone and strength with simple pain-free movements

of the body through the water. Turbulence is created when an object moves through

and disrupts the water, and can be used to resist or assist movement. Finally, surface

tension creates additional resistance of a breaking through from water to

air. For those individuals that feel their pain is exacerbated by the cold, it is

important to find a pool between 88 and 94 degrees Fahrenheit. This eliminates the

temperature gradient between skin and air. An added bonus is the fact

that the tactile stimulation of the water also helps to decrease pain by negating or

blocking pain signals to the brain.

Aquatic exercise is available in many forms. Many health clubs have come to

discover the benefits of aquatic exercise for their clients and now provide a pool facility

as well as a wide range of classes. A better alternative for individuals who have medical

precautions, or are not quite physically ready to begin an exercise program on their own, is

aquatic physical therapy provided by a licensed physical therapist. Ask your doctor

what aquatic physical therapy can do for you.

What is Chronic Pain?

Chronic pain is pain that continues a month or more beyond the usual

recovery period for an injury or illness or that goes on for months or years due to a

chronic condition. The pain is usually not constant but can interfere with daily life at

all levels. With help from the American Chronic Pain Association (,

here are some tips for you and your family to better understand and

manage chronic pain.

Is my pain all In my head?

This question is often asked by people who have been told

that they will have to learn to live with their pain At times, it is

difficult to pin down a specific physical

cause for the pain. But that does not lessen

the suffering. When we experience any

pain, it is in both our bodies and minds.

We cannot separate the physical and psychological affects any situation has on us.

How can I make my family understand how much pain I'm in?

There is no way for another person to feel your pain. It is more important for them

to understand what their role is in helping you manage the pain. The ACPA Family

Manual is an. excellent resource for family members. It can help them realize that

while family members dont feel the physical pain, their lives are affected in much

the same way as that of the person with pain. Throughout the book they may read

what others who live with a person with pain have to say and learn how to

with the changes in their life and yours.

I don't understand why my doctor is asking me to take a new medicine.

How can I find out more about what it is for and ways it

might effect me?

The best way to have all your question

answered is to ask your doctor. But visits to the doctor can be emotional and often

we don't think about questions until we

have returned home. If this happens, you

can call the doctor's office and speak to a

nurse for more information. You also can

ask your pharmacist for information

about your prescription. Or, log on the

web site of the pharmaceutical company

that makes your medication. Many of

them now have useful patient education

materials. Remember, only a health car

provider or pharmacist can answer you

questions about your medication.

What is a multidisciplinary pain management program (MPP)?

AMPP offers a variety of skills taught by trained staff to help a person better manage his or her pain.

These programs may not offer a cure, but they can help to improve the quality of

life and at the same time reduce the over whelming control

that pain can have on daily life. Visit the

section titled Choosing a Multidisciplinary Pain Program at

How do l find out more information about my pain problems?

Most chronic pain conditions have an organization that is

designed to provide specific information about cause,

treatment, and research. Visit the Resources section of for a complete listing.

Ten Steps - From Patient To Person

Making the journey from patient to person takes time.

The isolation and fear that can overwhelm a person with

chronic pain grows over time. And the return to a fuller,

more rewarding life also takes time. It's a journey with many phases.

The ACPA describes these phases 'as Ten Steps.

STEP 1: Accept the Pain -

Learn all you can about your physical condition

Understand that there may he no current cure and accept that you will need to deal

with the fact of pain in your life.

STEP 2: Get Involved -

Take an active role in your own recovery. Follow

your doctor's advice and ask what you can

do to move from a passive role into one of

partnership in your own health care.

STEP 3: Learn to Set Priorities -

Look beyond your pain to the things that

are important in your life. List the things

that you would like to do. Setting priorities can help you find a starting point to

lead you back into a more active life.

STEP 4: Set Realistic Goals -

We all walk before we run. Set goals that are

within your power to accomplish or break

a larger goal down into manageable steps.

And take time to enjoy. your successes

STEP 5: Know Your Basic Rights

We all have basic rights. Among these are right to be treated with respect, to say

no without guilt, to do less than hurnanly possib1e, to make mistakes, and to not

need to justify our decisions, with words of pain.

STEP 6: Recognize Emotion

Our bodies and minds are one. Emotions directly affect physical well being. By

acknowledging and dealing with your feelings, you can reduce stress and decrease

the pain you feel.

STEP 7: Learn to Relax -

Pain increases in times of stress. Relaxation exercises are one way of reclaiming control

of your body. Deep breathing, visualization, and other relaxation techniques can

help you to better manage the pain you live with.

STEP 8: Exercise -

Most people with chronic pain fear exercise. But unused

muscles feel more pain than toned flexible ones. With your doctor, identify a modest

exercise program that you can do safely. As you build strength, your pain can decrease.

You'll feel better about yourself, too.

STEP 9: See the Total Picture -

As you learn to set priorities, reach goals, assert your basic rights, deal with your

feelings, relax, and regain control of your body, you will see that pain does not need

to be the center of your life. You can choose to focus on your abilities, not your

disabilities. You will grow stronger in your belief that you can live a normal life in

spite of chronic pain.

STEP 10: Reach Out -

It is estimated that one person in three suffers with some form of chronic pain. Once you

have begun to find ways to manage your chronic pain problem, reach out and share

what you know Living with chronic pain is an on going learning experience. We all

support and learn from each other.

Coping Skills

Coping skills arc techniques that can be helpful in managing pain. ACPA

groups build on these coping skills:

We do not dwell on physical symptoms of pain.

We focus on abilities, not disabilities.

We recognize and talk freely about our feelings about pain and its control

over our lives. We do not make judgments. Group discussions are confidential.

We use relaxation exercises to help ease the tension that increases pain and

redirect attention away from our pain and suffering.

We demonstrate mild stretching exercises and encourage you to do them

daily, if your doctor approves.

We set realistic goals and evaluate them weekly. This helps members to see

that their desires can be achieved, one step at a time.

We recognize our basic rights, including the right to make mistakes, the

right to say no, and the right to ask questions.

What We Have Learned

In 20 years of helping each other, we have learned a lot. Here is a bit of that wisdom:

* We need the support of others who experience and understand chronic pain.

* Recognizing emotions helps us to understand ourselves.

*While our pain is certainly not all in our heads, attitudes and expectations

do make a difference.

* Learning how to relax is essential. It helps prevent tension and redirects our

attention on to things we have some control over.

* Staying active, within realistic limits, can help us remain flexible and strong

and reduce our sense of suffering.

* It is important to set realistic goals and chart our progress toward them.

* Chronic pain not only involves the person with pain but the family as well.

* Hearing others talk of similar feelings and experiences caused by pain reduces

our isolation.

* There are no wrong feelings.

* Half the battle is won when you begin to help yourself

Your Basic Rights

People with chronic pain are often

"people pleasers." We find it hard to express our needs and require that others

respect them. And when our needs are not met, tension is increased and

our pain seems worse. But you do have the Same basic rights that you grant to

others. You have the right to:

1. Act in a way that promotes dignity ad self~respect.

2. Be treated with respect.

3. Make mistakes.

4. Do less than you are humanely capable of doing.

5. Change your mind.

6. Ask for what you want.

7. Take time to slow down and think before you act.

8. Ask for information.

9. Ask for help or assistance.

10. Feel good about yourself

11. Disagree.

12. Not have to explain everything you do and think.

13. Say "no" and not feel guilty.

14. Ask why.

15. Be listened to and taken seriously when expressing your feelings.

See the American Academy of Pain Medicine.

and American Board of Pain Medication

and Choosing a Multidisciplinary Pain Program at


3 Replies

The European League Against Rheumatism (EULAR) issued the first guidelines for the treatment of Fibromyalgia Syndrome (FMS)in 2007. It stated that "Heated Pool Treatment, with or without exercise, is effective" .

Although in your piece you talk about water based exercise programmes which are good for pain, Hydrotherapy which is the heated pool treatment referred to above, its particularly beneficial not just for people who suffer from FMS (as many of us do) but from other chronic pain and fatigue conditions.

Although I am only recently dx with Hughes I have found this helps me for a number of reasons.

1. Raynaulds Phenomenon. This is common in Hughes, FM, CFS and many other autoimmune conditions. The warm water of the pool (always above 30 degrees) helps this issue as a normal pool is usually too cold.

2. Many of the exercise programs in swimming pools are not suitable for people with chronic conditions that include fatigue. In the water you can be lulled into a false sense of ability and could over do it only to pay later. Most Hydro Pools have programs with Physios with people with conditions that are similar and you are able to pace yourself without feeling you have to keep up.

Finally there are a number of very good Pain Management courses that people can ask to be sent on to learn skills to manage their pain from short term residential courses to 10 week, one morning a week sessions. These are excellent ways to learn how to cope with pain if it is over taking your life and I would recommend anyone speak with their GP about this if they are having a problem.

Hope this is helpful


Hi paddy

A useful article, going to see if gp Will refer for pain management and hydro therapy. Will try anything, cos reacting to meds aall the time.

Think major thing is gently does it!!!

Hope you ok today.

Take care gentle hugs love Jessielou x x x x:-) :-) :-) xxx


Hi Hughes and Jessie.

Hughes thanks for that extra informations all sources of information is useful to members.

Jessie let us know how you get on as i keep thinking of hydro thearpy but at the mo my pain managemnet team at St Toms is doing me ok maybe a referal and gently does it is sound advice



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