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Keeping track of pain and activity over the course of a few weeks can help you to spot patterns. This may help you to identify triggers for pain, times to do priority activities and times when you could use pacing more effectively.

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What is a chronic pain syndrome?

Your doctor has told you that you have a chronic pain syndrome. What does it mean?

In most cases, chronic pain starts with an acute injury or illness. If the pain of this injury or illness lasts longer than six months, it's then considered chronic pain. Sometimes, chronic pain subsequently causes complications. These complications, in turn, can make the pain worse. A chronic pain syndrome is the combination of chronic pain and the secondary complications that are making the original pain worse.

Chronic pain syndromes develop in what we call a vicious cycle. A vicious cycle is the cycle of pain causing pain: chronic pain that causes secondary complications, which subsequently make the original chronic pain worse.

What are these secondary complications? Chronic pain can lead to some common problems over time. For example, many people tend to have trouble sleeping because of pain. After a while, they are so tired and their patience has worn so thin that everything starts bugging them. They also find that coping with chronic pain gets harder and harder too. Some people stop working. With the job loss, they might come to experience financial problems. The stress of these problems keeps them up at night. Thinking too much in the middle of the night can make the original sleeping problem even worse. It can be hard to shut off the thinking even in the middle day. Chronic pain can also affect the roles people have in the family. They miss out on children's activities, family functions, and parties with friends. As a result, many people struggle with guilt. Guilt isn't the only emotion that is common to living with chronic pain. Patients tend to report some combination of fear, irritability, anxiety and depression. Patients also tend to express that they have lost their sense of direction to life. They are stuck. These problems are all common when living with chronic pain.

These problems cause stress. They are called stressors, which means that they are problems that cause stress. These stressors can make pain worse because stress affects the nervous system.It makes the nervous system more reactive and you become nervous. Now, pain is also a nerve related problem. Whatever its initial cause, pain travels along the nervous system to the brain, which is also part of the nervous system. Once reaching the brain, it registers as pain. When stress affects the nervous system, making it more reactive, the pain signals reach the brain in an amplified way. So, stress leads you to have more pain.

The vicious cycles of pain become clear. Chronic pain causes stressful problems, which, in turn, cause stress that makes the pain worse. This combination of chronic pain and the resultant problems that make pain worse is what we call a chronic pain syndrome.

Date of publication: April 27, 2012

Date of last modification: September 8, 2016

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What is Chronic Pain Syndrome|Chronic Pain Syndrome Symptoms

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Your doctor has told you that you have a chronic pain syndrome. What does it mean? In most cases, chronic pain starts with an acute injury or illness. If the pain of this injury or illness lasts longer than six months, it's then considered chronic pain. Sometimes, chronic pain subsequently causes complications.

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Clear and informative series of 1 minute slide-show lessons on chronic pain

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A free online course for people with persistent or chronic pain. Learn a science based approach to reducing symptoms and getting back to the life you want to live.

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Pete Moore, Pain Toolkit - info@paintoolkit.org

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Pain Self Management by Pete Moore | Pain Toolkit

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Is pain self management your first choice, or last resort? The Pain Toolkit by author Pete Moore, helps people all over the world self manage persistent pain.

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Links to support groups for people with specific pain conditions

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Support groups

Please see the Therapies page for descriptions of individual complementary therapies.

If you have difficulty with any of these links or find that some of them have moved or are defunct please Contact Us.

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Support groups Please see the Therapies page for descriptions of individual complementary therapies. Arthritis Care www.arthritiscare.org.uk Information and leaflets. Local Challenge Arthritis courses throughout the UK. Away With Pain www.awaywithpain.co.uk BackCare www.backcare.org.uk Help line: 0845 130 2704 The National Endometriosis Society www.endo.org.uk Fibromyalgia www.fibromyalgia-associationuk.org and www.ukfibromyalgia.com Irritable Bowel Syndrome (IBS) Self Help and Support Group www.ibsgroup.org ...

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Explain Pain leaflet from The Pain Toolkit

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Explain Pain leaflet from The Pain Toolkit

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The Spoon Theory- a brilliant way of explaining fatigue in chronic illness to well people

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The Spoon Theory- a brilliant way of explaining fatigue in chronic illness to well people

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Website of Christine Miserandino, author of The Spoon Theory.

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Website of Christine Miserandino, author of The Spoon Theory.

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But You Dont Look Sick? support for those with invisible illness or chronic illness

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May 11, 2016 | christine | Featured, Spoon Lady Speaks | 41 Comments

In addition to my lupus, I also have fibromyalgia. One of my best friends was recently diagnosed with it as well. I love her. I feel that although pain and fibro is something I know a bit about, I can not help her acceptance of this diagnosis. I have seen her in pain both emotionally and physically.

If you ask my dad about Lupus he will give you a very seemingly odd answer. He will always say "Getting a grip on Lupus is like trying to tie up Jello with a string" Most people laugh, look confused, or even attempt to think of how one would even begin to tie up Jello with a string. It's one

Wear orange or purple, send friends your favorite awareness websites (bydls.com ? lol) to educate, read, ask your friends to read some lupus facts, make your status a lupus support or awareness message, blog about lupus, blog about your friends with lupus, Do something nice for a person living with

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But You Dont Look Sick? support for those with invisible illness or chronic illness - ButYouDontLookSick.com is an online community for support, education, and inspiration.

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May 11, 2016 | christine | Featured, Spoon Lady Speaks | 41 Comments In addition to my lupus, I also have fibromyalgia. One of my best friends was recently diagnosed with it as well. I love her. I feel that although pain and fibro is something I know a bit about, I can not help her acceptance of this diagnosis.

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The food you eat and your pain...

Food is a major, and enjoyable, part of our lives and eating the right sort of food can have an effect on your general health and even your pain levels. Read below about good nutrition, how food can affect pain levels, some great cooking tips and our recommended books.

Nutrition

When you have pain and/or ill health your diet becomes even more important than normal. Those of us with longstanding pain often have digestive problems, sometimes due to the drugs we may be taking. If the problem is severe or longstanding it's best to seek the advice of a nutritionist. Always seek advice from your doctor before making any major changes to your diet. For a therapist try the Institute of Optimum Nutrition,
https://www.ion.ac.uk/
or
https://www.nutritionist-resource.org.uk

For optimum function and least strain on your body, try to maintain your ideal weight. For those with arthritis or other joint problems, less strain equals less pain.

Avoid too much salt, sugar and alcohol. Sugar provides little nutrition and contributes to weight gain. Alcohol is high in calories and can deplete the body of vitamins and minerals. It also potentially interacts negatively with medications.

Food that may affect pain levels

Some foods may help to decrease pain and inflammation, such as: flax seed, hemp or olive oil, oily fish, such as sardines and mackerel, linseeds and pumpkin seeds, bananas, ginger, chilli pepper, brown rice, cooked vegetables such as broccoli and Swiss chard, orange vegetables like carrots and sweet potatoes, and yellow vegetables like summer squash. Some people say they do better with non-citrus fruits. If you avoid citrus fruits, make sure you still include plenty of other fruit in your diet.

Cooking tips

As often as you can, use fresh ingredients for the healthiest option but you could substitute ready prepared ingredients if you wanted to. Convenience foods that are useful are frozen prepared and pre-cut vegetables, chopped garlic in a jar, tins of tomatoes, canned soup, ready-prepared sauces, etc.

Make double quantities where possible and freeze the unused portions.

Have fresh fruit as an easy and healthy pudding option.

Try baking vegetables and fruit. Jacket potatoes are very easy and nutritious. Cut other vegetables into chunks and baste with olive oil. Bake fruit in a little water. Sliced apples, peaches, plums, apricots can all be cooked this way.

Take great care when lifting pans and taking dishes in and out of the oven. If possible, ask someone else to do the lifting for you. Make sure you don't over-reach or bend too much when using a bottom oven.

To cut down on a last minute rush, and the washing up, one-pot or one-dish recipes are very useful.

When preparing a meal collect all the ingredients that you need together before you start.

Chop vegetables in stages. Place chopped food in a dish, cover with clingfilm and put in the fridge till needed. Don't store vegetables in water as the vitamins will leach out into the water.

Recommended Recipe Books

Cousins, Barbara, Cooking Without: recipes free from gluten, sugar, dairy, yeast. Also Vegetarian Cooking Without, Thorsons
Barnard, Dr Neil, Foods that Fight Pain, Bantam
Holford, P, Ridgeway, J, The Optimum Nutrition Cookbook, Piatkus
Savill, Antoinette, The Sensitive Gourmet, HarperCollins
Savill, Antoinette More From The Sensitive Gourmet,Thorsons

References

The Duke University Medical Center Book of Arthritis by David S. Pisetsky, Susan Flamholtz Trien
Arthritis: What Works by Dava Sobel, Arthur C. Klein

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The food you eat and your pain... Food is a major, and enjoyable, part of our lives and eating the right sort of food can have an effect on your general health and even your pain levels. Read below about good nutrition, how food can affect pain levels, some great cooking tips and our recommended ...

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An alternative format of pain diary

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It is easy for life to get out of balance with chronic pain. Often, enjoyable activities are the first to go. It is common to focus on the frustrating elements of life and to think "I haven't done ANYTHING today" or "I never do anything". Keeping a log of different actions which support wellbeing can help you aim for a good mix of beneficial elements in your life. It also provides a visual reminder of all the things you do achieve from day to day, when you are feeling low. The actions can be small or large- just notice when you are doing them and celebrate every one, no matter the scale of it!

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Article about the lived experience of chronic conditions where the cause cannot be identified

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Article about the lived experience of chronic conditions where the cause cannot be identified

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From long-term pain-sufferers, to siblings who have to use wheelchairs, medically unexplained physical symptoms are one of the most common problems encountered by doctors. Kate Hilpern reports

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Chronic pain info and advice- lived experience perspective

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Chronic pain info and advice- lived experience perspective

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Very comprehensive, informative website created by a person living with chronic pain. Excellent blog covering a huge range of issues related to living with "invisible illness"

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Welcome to the Princess' Tower

The complicated conditions that cause our chronic pain do not mean there is exclusively the physical pain in the body to cope with, as so many healthy people presume, it's your entire life. No single aspect of living goes untouched, no thought untainted by the constant presence of pain and the many symptoms of chronic illness.

Yet our society seems in denial of all that's unwell. We're meant to recover as if it weren't a complicated pain condition at all but a broken bone or painful tooth. When we don't recover, our symptoms are so often questioned. People who have no concept of what day-to-day living with chronic illness and pain may offer their advice relentlessly, as if we haven't already tried everything to help heal ourselves.

Others can drop away, and though I'm yet to meet a pain patient who hasn't lost loved ones, equally, they all have found new friends through shared pain and our courageous communities of pain warriors and warrior princesses. People fear and avoid that which is misunderstood and there's nothing more misunderstood than invisible illness and pain.

Like our symptoms we too are hidden. We hide our fears and our pain, our list hopes and dreams, the daily, incessant challenges of erratic energy levels and fluctuations in the symptoms. Having a complicated pain condition that is so frequently misunderstood by our wellness-honouring society means we need also bear the burden of repeatedly explaining our pain and limitations.

This website is my offering to you. Knowing first-hand how horrific it is to live with pain from over 17 years of systemic CRPS and fibromyalgia, I want to help, to relieve a little of the pressure and lunacy of what it means to live and cope with chronic illness and pain.

There's a new extended post every month, spoon-dependant posts in-between, regular posts on Facebook, and Twitter, and as many tips and techniques as princessly possible, to help your life with pain be a whole lot easier and you a lot happier, less isolated. I encourage you to connect with other pain patients worldwide (on the Guest Book & Facebook page), building a plethora of positive methods for our growing community of princesses [and princes] to live - and cope - with chronic pain.

About The Princess in the Tower

This website is dedicated to increasing awareness of Complex Regional Pain Syndrome, or CRPS, formerly known as Dystrophy or , particularly long-term CRPS/RSD, which is so rarely spoken of. Most focus on RSD of 3 to 9-12 months that is still treatable with hope of remission. Long-term RSD is where the patient has had the condition for over that time frame, sometimes as long as decades have passed.

While this is one focus, the Tower's been created to help as many people with chronic pain as is princessly possible. There is also healing support for fibromyalgia patients.

The Princess in the Tower is about living well anyway in spite of the pain, being happy anyway, and sharing healing and coping chronic pain and illness tips to help each other is perhaps one of the bravest communities of all.

The Princess in the Tower is here to help, bring comfort and healing, even if it's healing of the spirit, I hope you enjoy these offerings and return again soon.

This website is being updated regularly so check back often for new contributions to the site. You may like to join our growing community on Facebook and Twitter, and also feel free to sign the Guest book if you like what you see.

A good starting point for carers and friends would be to read the two letters written by chronic pain patients here.

To prevent getting CRPS/RSD:

ALWAYS TAKE 1000mg/day VITAMIN C AFTER ANY SPRAIN OR STRAIN

Research shows that it can help to prevent CRPS/RSD from developing
The Princess in the Tower
About the Princess

When I created the Princess in the Tower in February 2012 from my bed, I was fed up of dull, clinical and depressing websites about chronic pain, particularly specific information on RSD/CRPS, which began in 1999. It is now systemic (more detail if you're interested below).

It was important to make my site welcoming, friendly and supportive, as I do believe in positive outlooks, that your mind is the filter of your world, particularly in so much as controlling your reaction to such testing circumstances and the seemingly endless challenges of chronic pain and illness.

Chronic pain and illness has been a huge part of my adult life. Understanding it, what treats it, how to live and help others live with severe chronic pain has become the activity I pace around managing my pain and the many flare-ups that occur.

I wanted to do this project out of compassion as well as empathy for others who have such enormous limitations on their lives; to let them know that they're not alone, to provide a great resource to help fellow patients help themselves, and to help those around us also understand invisible chronic condition(s) much better than they currently do, helping them to understand, not pity.

The amazing people I have met through the website, Facebook and Twitter, all reveal that even the severity of chronic pain and illness is not enough to topple these brave souls. Everyone has wobbles but I hope the princess in the tower helps ease at least a little of the weighty burden and bring comfort.

My experience with RSD/CRPS began in my left foot in 1999 (I'm now 37), then in 2004 I was rear-ended by a drunken driver, causing massive RSD/CRPS spreading, it's now diagnosed as full body/systemic 'cold' CRPS (the most painful/affected areas being the trunk/back/neck, arms/wrists/fingers, legs/ankles/knees/feet). I am bedridden 80% of the time, the remaining time is spent doing yoga, chi kung and physiotherapy for pain management, and also aqua therapy. I also hold a diploma in Pharmacology & Pain Control.

I hope my humble efforts help pain patients lead a happier and healthier life, with less pain and more freedom and support.

Healing, strength and hope of better days,

Princess x

DISCLAIMER: This site is for general information and much-needed support to the hidden community of chronic pain patients. I am not a Medical Professional but do live with systemic CRPS (since 1999), so have a good understanding of the issues of life with chronic pain and particularly these conditions. Information here is to be used as a guide only and before trying any treatments always consult your GP and/or Specialist.

Copyright©2016 by Jo Malby. All rights reserved.

You are welcome to print my offerings to you for your personal use. Other than that, no part of this publication may be reproduced, without the prior written permission of the author.

Please contact me before any public syndication of articles and posts, thank you.

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Welcome to the Princess' Tower Healing Resources for Managing CRPS, Fibromyalgia and Chronic Pain Support, Strength and Comfort Sign-up to the newsletter for a Free Flare-Up Toolkit Regular articles and mini blog posts on the Princess in the Tower Facebook page. Also regular articles, q

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Chronic Pain section of CBT-based website, www.getselfhelp.co.uk

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Chronic Pain section of CBT-based website, www.getselfhelp.co.uk

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cognitive behavioral therapy for chronic pain

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cognitive behavioral therapy for chronic fatigue

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Self help guide for chronic pain or fatigue using CBT

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caring for someone with rheumatoid arthritis

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12 Nice Things You Can Do for Someone in Pain

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If you have a loved one with RA or any other chronic disease, read on. You'll be sure to find a few new ways to show you care.

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Friends often don't know what to do and what NOT to do or say when someone they care about develops a chronic pain condition. We asked chronic pain sufferers to share their advice to help guide friends eager to be supportive, encouraging, helpful, and understanding.

My friend Kathy once derided me for not telling her I'd hurt my back and that the pain and stiffness had kept me house-bound for days. "I would have come over with food and kept you company," she said. I was surprised by her obvious annoyance. For many years, Kathy had been living with Stage 4 breast cancer. She was in and out of hospitals for monitoring, tests, and treatment. She lived with varying degrees of pain.

"I didn't want to bother you," I explained. In truth, I felt as if I'd be courting sympathy for something minor (my sore back) from someone dealing with a life-threatening illness on a daily basis.

But Kathy wasn't having it. "Cancer is what I have, it's not who I am," she said. "I'm also your friend." And she reminded me that she was more than capable of saying "no" if she wasn't up to it.

I learned an important lesson about making assumptions: Don't.

A couple of months later when I came down with a bad case of the flu, I called Kathy. She brought chicken soup and tissues and kept me company. We laughed a lot.

To Be or Not to Be

When a friend or family member develops or is living with a chronic pain condition, we all struggle with how to be and how not to be. We all want to be compassionate and supportive; to be helpful without being intrusive; and to cheer them up whenever we can.

While dealing with a friend's illness is never easy, chronic pain conditions are especially difficult because the pain can vary in intensity from day to day, symptoms wax and wane and sufferers often don't reveal the pain. Sometimes, chronic pain isn't visible. As one Lyme disease patient put it, "Just because I don't live my pain out loud every day doesn't mean I'm not in pain."

LaRita Brallier Jacobs has another view. "It's not fair if you lament that friends and family just don't get how exhausting chronic pain is if you're spending all your energy pretending to be Superman/woman," she says. "I did that for too long." Brallier Jacobs of Seminole, Florida, has been living with rheumatoid arthritis for more than 20 of her 56 years.

Working Through It

When a friend is suffering, whatever the cause, they don't suddenly turn into another person. All their good and bad qualities remain and sometimes become magnified. Now and then, one or both of you many offend, anger, or disappoint the other. Mistakes will be made on both sides. That happens between close friends even when illness isn't a factor. When these missteps and misunderstandings happen, acknowledge the situation and have a calm conversation with your friend about what happened and why and how to avoid the quarrel in the future. Then apologize to each other and move on.

There will be bumps in the road but we hope the dos and don'ts we've compiled provide insight and wisdom that will help you minimize the chances of saying or doing the wrong thing and maximize your chances of being the friend you'd want if you were the faced with chronic pain or illness.

#1. Don't assume. Ask.

Chronic pain (CP) isolates sufferers both physically and psychologically making it difficult for those with pain to interact with the world and their friends. "All humans need to feel useful," says Brallier Jacobs . "When friends allow me to help them, I feel useful," she says. From January into April, Brallier Jacobs prepares tax returns for friends. Of course, she makes sure her "clients" know that she needs ample time to finish the returns. No last minute filers for her. "I can't predict what my body will dictate on April 14th."

The uncertainty of chronic pain shouldn't stop you from inviting your friend to join you or a group of friends for dinner, a movie, or any other activity. "Don't automatically assume chronic pain sufferers can't participate," says Tara Langdale-Schmidt, 32, of Sarasota, Florida. "Invite them so they won't feel left out,"

For years Langdale-Schmidt suffered from severe vulvodynia, a condition that causes intense sharp, stabbing, and burning pelvic pain. She's since found a treatment that has diminished her pain. Even so, she knows chronic pain is unpredictable. A person can go from having a good day to a bad one in minutes, explains Langdale-Schmidt.

So when you invite someone with CP to join you for a movie or dinner, assure him or her that the invitation is non-binding and that if they have to cancel-even at the last minute-you will understand. An invitation without obligation is one that a person with CP may feel more comfortable accepting.

#2. Don't take it personally.

When a person is ill, we want to visit, to cheer them up, amuse them or just keep them company. But for people with CP, the unpredictability of their pain makes it difficult to plan and engage with visitors. They may decline your offer to visit. And while it may seem that your friend doesn't want to see you, the reality is different. "These decisions [to see or not to see friends] are not made lightly," says Alyssa Relyea.

For over 15 years, Relyea has lived with the constant pain and dysfunction of severe temporomandibular joint disease (TMJ). The disorder affects the way she talks, smiles, eats, and laughs. Relyea who volunteers at the American Foundation for Suicide Prevention, where she serves as the Chairperson for the Women's Outreach Committee, says that she has to "make decisions every hour of my day about who I will talk to, how much ,and whether I need to say no."

So even if your friend repeatedly turns down your invitations to go out or to drop by, keep asking ( always ask if you can visit, never arrive unexpected) and don't take the "rejection" personally. Saying "no" to your visit isn't a reflection of your friend's affection for you. Rather, it's an indication of how they are feeling on any given day.

#3. Don't touch without asking.

When you do meet up with or visit your friend, always ask if it's OK to hug or touch them. People with diseases that cause nerve pain-Lyme disease, fibromyalgia and Complex Regional Pain Sydrome/Reflex Sympathetic Dystrophy (CRPS/RSD), for example-have an increased sensitivity to touch. Barby Ingle, President of the International Pain Foundation has CRPS/RSD. A touch, a hug, or even a handshake "can send me into a flare for minutes, hours, or days," says Ingle.

#4. Don't criticize. Do encourage.

It's easy to fall into the trap of offering unsolicited advice about what the person with CP should be doing or might consider doing. Although it may be well-intentioned, suggesting therapies or treatments you're read or heard about probably isn't a good idea unless you know your friend welcomes that input.

"Very often chronic pain requires more than pulling up your boot straps and digging in," says Relyea. "It's easy to stand outside a situation and see what you think needs to be done to relieve pain, but you probably don't have the whole story." Relyea resents it when people tell her to exercise more. "I exercise plenty and am very active," she says, noting that the person offering that bit of advice isn't living in her shoes.

Also, keep in mind that people in pain need encouragement to become their own best advocate and to stand up for themselves. "When it comes to their care, people have to be OK with the choices they make," says Ingle. "If someone says, 'I wouldn't do that treatment [for whatever reason], and you shouldn't either,' I remind them that we are all individuals." The moral: don't push your agenda on others.

#5. Do offer help. Don't ask open-ended questions like, "What can I do to help?"

It's important to know what you're comfortable doing and what's simply not in your nature. If you're someone who can't handle hospitals or doctors, don't offer to accompany a friend to a medical appointment. Instead offer to do something that suits your skills and personality: run errands, make meals, shop for groceries, do laundry, etc. If you're a fantastic organizer or a wiz at straightening out medical insurance, offer those skills. You get the idea.

Be specific so you friend doesn't worry that they're asking you to do something you really don't want to do. Also, consider that it's easier and more comfortable for the person with CP to accept your offer if it's presented in the context of something you're already doing. For example:

I'm making a chicken tomorrow. Can I bring you some?

I'm going food shopping tomorrow. How about I pick you up some salad fixings, fresh fruit, milk, coffee, tea, and any other staples you need?

I'm taking my kids to the park tomorrow. I'd love to take your kids along to keep mine company.

I'm running a bunch of errands this afternoon. I can easily check some items off your to do list while I'm at it. Do you need anything mailed, picked up or dropped off at the cleaners or shoemaker?

I'm in the mood for some canine company. Can I walk your dog?

# 6. Top 10 Things NOT to say

1. The pain is in your head. (And we don't mean a migraine.)

2. It could be worse. (This one is particularly grating. It can always be worse.)

3. Consider the alternative. (Not helpful.)

4. God never gives us more than we can handle. (Unless you know for certain that your friend is actively religious and is motivated by this belief.)

5. Everything happens for a reason (see above).

6. God works in mysterious ways. (see #4)

7. You can will the pain away. (No, you can't.)

8. You don't look like you're in pain. (Self-explanatory)

9. If you exercised more, took vitamins, slept more, danced more, etc., you'd feel better.

10. Maybe you should try this or that therapy. (If you have medical expertise or personal experience or if your friend brings up a particular therapy they're interested in, helping them make a decision is fine. Otherwise, don't play doctor.)

The Magic of Ordinary Days

When every day is a struggle, sometimes the best gift a friend can give to a friend with CP is the assurance that you'll be there through it all. Living with chronic pain is a wrenching struggle. My friend Kathy once said it made her long for the joys of the ordinary. It's a sentiment echoed in the 2013 book, How To Be A Friend To A Friend Who's Sick. In it author Letty Cottin Pogrebin, shared what she'd learned after being diagnosed with breast cancer in September 2009 at the age of 70. There are times, she wrote, "When the kindest thing you can do" for the ill "is to confer upon them the honor of the ordinary."

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6 Ways to Be a Friend to a Friend Living With Chronic Pain

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Friends often don't know what to do and what NOT to do or say when someone they care about develops a chronic pain condition. We asked chronic pain sufferers to share their advice to help guide friends eager to be supportive, encouraging, helpful, and understanding.