Company’s Calling, a popular Monday feature, hasn’t appeared for a while because I ran out of volunteers who wished to be interviewed. I would love to get the feature going again because I get emails (and comments) from people who appreciate learning how others have dealt with and who are dealing with their issues of chronic pain.

When people are living with chronic pain, they often feel alone – and we definitely know that they aren’t. Would you or someone you know be interested in sharing your story? You can remain anonymous if you would like and you can answer the questionnaire or write up your story as you feel is right for you.

Here are some great examples of previous Company’s Calling features:

• Company’s calling - Janine Shepherd
• Company’s calling – a different type of visitor
• Company’s calling: For Grace’s founder, Cynthia Toussaint speaks out
• Company’s calling – an RN speaks about her fibromyalgia
• Company’s calling – living with the pain of interstitial cystitis
• Company’s calling – the road to a diagnosis for endometriosis
• Company’s calling – a retired surgeon speaks about his nerve pain

If you think this may be something you would like to do, please email me at marijke.durning@b5media.com or leave a comment below and I’ll get in touch with you.

Image: iStock

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Post from: Blisstree

Call out for Company’s Calling participants

This week, Janine Shepherd joins us on Company’s calling. Some of you may know her name, particularly if you live in Australia, others are hearing her name for the first time.

Janine was an Olympic cross-country skier who was training on a bicycle, when she was run over by a truck. According to her website, “Her neck and back were broken in six places, and her right arm, collarbone and five ribs fractured. Her right leg had been ripped open; she had sustained head injuries and massive internal injuries. She had severe lacerations to her abdominal area and had lost five litres of blood.”

However, Janine is now a successful motivational speaker, an author and a pilot. Here is our interview:

Janine, do you remember the actual accident? If not, from what point do you remember?

I do not remember my accident. The medical team calls it post-traumatic amnesia but I have a different perspective on the events. I do not remember the accident because I had already started the process of leaving my body and therefore wasn’t able to recall what happened at the accident site. Although I didn’t have the typical near death experience i.e. the white light, I do recall a presence which stayed with me for most of the first week while I was in Intensive Care. 

For the first week I drifted between two worlds while my doctors fought to keep me alive. The desire to leave was incredibly strong as the physical pain was so intense, but something kept me connected to this world. I didn’t know it at the time, but my father sat by my bedside for that entire week holding my hand and willing me to live, and perhaps that was the lifeline that kept me here. 

Did you ever have experience with pain before the accident? If not, do you remember how you felt if you came across someone who was in pain? Was it something you thought about or was it not on your radar screen, so to speak?

My only experience with pain was associated with my sport and the injuries that one normally sustains in training. I had suffered from the normal range of injuries expected from elite athletes and had only just recently recovered from surgery for compartment syndrome when I had my accident.  

Do you feel your pain was well managed while you were in the initial stages of recovery? And in rehab?

I spent six months in a spinal ward and due to the extent of my injuries I was on strong painkillers i.e. morphine and pethadine for months. When I was on these drugs I was still in intense pain however the difference was that I just didn’t care about it anymore. It was extremely difficult weaning myself off these drugs and I did become dependent on them, however they were absolutely vital to me in the early stages of my accident. Once I left hospital I was off any strong drugs and have only needed them when I have returned to hospital for more surgery.

Did you feel that the medical staff understood your pain?

Overall the medical staff were understanding of my pain, however, there was an occasion when a new staff member decided upon herself that it was time I was weaned off pethadine despite it being prescribed by my doctors. I was in incredible pain and couldn’t understand why until I discovered she had reduced my dose. The doctor was called and immediately gave me the dose that I was written up for. I thought it was incredibly insensitive of her.

Do you have pain now?

Due to my injuries I live with a certain level of pain, however I have managed to work out ways to make it manageable.

When you were experiencing your worst pain, what worked for you and what didn’t?

I mostly manage my pain using natural methods that work for me. I find that when I stay active and flexible I am stronger and more able to cope with the demands on my body and my physical disabilities. I also practice tai-chi, and have regular massage and acupuncture treatments. However, I am a believer in complementary medicine and there are still times when I need assistance with my pain from mainstream medicine. 

Obviously, you had other issues to deal with besides pain, but what would you say played a larger role in how you felt during your recovery, your limitations or the pain?

I am not a believer in limitations, there are only constructs of the mind. Even when I was in a wheelchair I decided that if I couldn’t walk then I would fly, and for my first flying lesson I had to literally be lifted into the aircraft! I pursued this dream despite being in constant pain and having to undergo many operations, however my dream to fly helped me to overcome this.

Is there anything that, when you think of your treatment, you wish you had tried or wish you had tried sooner?

I believe I have tried everything that was available to me at the time. I am open-minded and believe that we need to take whatever action is needed to stay functional in our day to day lives. I am about to have a cortisone injection in my arm as I am suffering extreme pain from having to load up my upper body so much (due to the lack of strength in my legs) and all other avenues have been exhausted.

Is there anything you would change about your treatment, if you could?

No, I have dealt with everything in the best and most knowledgeable way I could at the time.

What would you tell someone else who had to fight like you did to get where you are now?

When they were ready I would tell them about my philosophy in life which is to ‘learn to love the hills.’ I always trained on the hills as an athlete and this shaped my outlook on life. I developed strength and discipline which I needed to face the huge challenge that lay ahead of me. The hills, or obstacles, that we face in life keep coming, and when we embrace them and learn to love them then anything is possible!

Is there anything you would like to add?

I believe my recovery was 10% physical and 90% mental. The battle is really in the mind and when you control your mind you control your destiny. I have done more since my accident then I ever would have done before. It was only when I was pushed to the very edge that I was really able to understand what I am capable of.  I now understand that my accident has been a gift as it has taught me so much about life and living.

Thank you Janine for sharing your story.

Is there anything you would like to tell Janine or to share with her?

Image: iStock

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Post from: Blisstree

Company’s calling – Janine Shepherd

Today’s visitor with Company’s calling is not only someone who is living with pain, but someone who helps people who have pain. Serena Wadhwa Psy.D., LCPC, CADC of the TriQual Living Center has graciously agreed to an interview about her work and here is what she had to say:

What made you interested in this field, particularly working with people who have chronic pain?

There is both a professional and personal reason that contributed to my interest and subsequent expertise in chronic pain management. During my doctoral training, I worked at a pain clinic. As a therapist, it was frustrating to witness patients suffer as the various interventions provided pain relief on a trial and error basis. Personally, I was diagnosed with a chronic pain syndrome. I didn’t want to resort to using medications if I didn’t have to, so I looked for alternative ways to manage the pain.

What is the significance behind the name TriQual Living?

TriQual Living Center focuses on the quality of the body, mind and spirit. Each of these interact and influence the others. The Center offers workshops, consultations and educational seminars to help individuals connect the three in better alignment. This helps to better manage stress, pain and other issues.

How do you go about assessing a patient with chronic pain when you first meet him or her?

I believe that developing a trusting, safe and collaborative relationship is primary. While I am an expert on certain subjects, I am not an expert on an individual’s experience of their pain, stress or other presenting problem. I seek to understand feelings, thoughts, behaviors, values and the narrative of the individual’s experience to help determine appropriate strategies. Most strategies typically involve ignoring, alleviating or eliminating the pain, but those are not the only options that exist.

I see that you work with people who have substance abuse and addiction problems – how is someone with that type of history managed if they develop severe chronic pain?

While my clinical experience is directed more towards individuals who suffer with chronic pain first and then develop an addiction to pain medication, it works the same way. The addiction has to be managed first, or at least, in conjunction with managing pain.

What would you say to someone who comes to you after having tried just about every medical treatment imaginable without success and is still experiencing severe chronic pain?

My guess would be that the individual feels pretty hopeless and believes they will never get better. Never enjoy certain activities, never be the person they want to be. For most individuals with chronic pain, it’s black/white: “I’ll always be in pain; I’ll never get better.” I would first listen and develop a relationship with the individual. I would seek to understand where they are coming from, what they have specifically tried, what their expectations are and how open they are to other methods of pain relief. I focus on baby steps and not necessarily the big picture. It varies from person to person, since some individuals with chronic pain are looking for immediate relief. I pay attention to the relationship of the individual to the process of pain management as well as how effective the strategy is for the individual.

Is there anything you would like to add?

Yes, managing pain is not an easy thing, but it’s doable. It’s a lifestyle change. It’s a value change, it’s an identity change. Those changes require more that what most people realize. But people can and have gotten better. It just takes time.

Thank you so much for allowing us to see a bit into the “other side” of chronic pain. I enjoyed reading about your approach and hope that our visitors did too.

Image: iStock

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Technorati Tags: chronic pain blog,chronic pain,living with chronic pain,pain blog,relief from chronic pain,serena wadhwa,triqual living center,chronic pain management,chronic pain syndroe,eliminating the pain

Post from: Blisstree

Company’s calling – a different type of visitor

This week, our lady has a visitor again. We welcome Cynthia Toussaint, from Los Angeles, CA, founder and spokesperson with For Grace, a nonprofit organization dedicated to ensuring the ethical and equal treatment of all women in pain.

She shares with us her journey with Reflex Sympathetic Dystrophy (RSD), as she says, also known as the Suicide Disease.  RSD is more commonly referred to now as complex regional pain syndrome, or CRPS.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

I was stretching at the ballet barre in October of 1982 –as I did everyday.  I felt and heard a pop in my right (supporting leg) hamstring that felt like a guitar string that had been plucked and broken.  

Did you seek help right away? What type of help did you get?

Yes.  Because the radiating pain down to my foot and up to my buttocks was so extreme by that evening, making it virtually impossible for me to sit or lie on the right side of my body, I went to see my ballet trainer first thing the next morning.  

He gave me whirlpool and ice therapy, along with ankle weights to strengthen the hamstring — and advised me not to dance for possibly up to eight weeks depending on the pain.      

What did the doctors tell you when you did seek help?

At first they told me that it was simply a torn hamstring that would resolve quickly.  When the pain continued to get worse, I was told to quit dancing.  I was dancing professionally in two shows a night at the Flamingo Hilton in Las Vegas while crawling around our apartment floor during the day due to the ever increasing pain.

When the pain spread into my left leg– and later throughout my entire body– I was told for over a decade that my pain was imaginary… that I needed to see a psychiatrist.  Even after the psychiatrist’s report came back normal, the doctors brushed me off, saying things like “you have stage fright”, “tendonitis from Mars”, “you’re only a woman anyway.  It doesn’t really matter.  Why don’t you just shoot yourself in the head.”  Disparaging things in that vein. 

What have you tried to help you with your pain?

A million things over the last 25 years — but here are the things that helped.  Hydrotherapy.  Pilates.  An understanding, compassionate doctor who believes me and is willing to partner with me.  Pelvic therapy.  Feldenkrais.  Anti-seizure medications.  My own custom ballet floor physical therapy each morning.  And heat helps.  Most importantly, my partner of 28-years, John, who loves and supports me each day.  Also, running For Grace (if I’m good at pacing myself) is good for my body and soul.  Writing my memoir is currently a great catharsis and healer for me.

Can you tell me a bit about what worked and what didn’t?

All above helped me… icing hurt me because it spread my RSD.  Also, working through the pain (physical therapy) ALWAYS set me back further.  Also, I’m a workaholic– and in 2004, I worked straight through a serious flu, resulting with the diagnosis of fibromyalgia, that starves me of sleep!  

How does having this pain make affect you in terms of how you live your life?

I’m always in pain and many days extremely fatigued.  I use a wheelchair for any walking distance over a 100 ft. or so.  Also, I need a caregiver for cooking, cleaning, shopping, laundry, etc. I’m isolated because I can’t get out without a caregiver.  I was bedridden for ten years due to pain before I got any treatment.  And I couldn’t speak for five of those years while the RSD ravaged my vocal cords and the rest of my body.  John and I used sign-language and I wrote on a board during those years.

I lost all my life dreams and ambitions — so I’ve re-invented myself using the skills I have left to give my life great purpose and meaning.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I now know that my HMO doctors were never going to stop abusing me, let alone treat me.  I had government insurance (Medicaid) that I signed over to that HMO.  If I were to do it again, I would have walked — or wheeled — away from that abusive system and gone to Medicaid doctors.

I needed pain specialists who had no incentive to not treat me from the moment I became ill.  RSD, if caught and treated early, is often put into remission.  Sadly, that was not an option for me…      

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

My standard advice is to get yourself to a multi-disciplinary pain management center affiliated with a university/medical school as quickly as possible.  It’s your life and it’s worth saving.  Also, walk away from any and all healthcare professionals who dismiss or discount your pain…

All of us with pain deserve to be treated in a timely and respectful manner. 

Also, educate yourself about your pain and/or diagnosis on the Internet.  I surely do wish we had had this extraordinary technology back when I got sick in 1982.   

Thank you so much Cynthia for taking the time to tell us your story. It’s one of those illnesses that are not understood, let alone known about.

For those who are interested, there is a conference going on at the end of this week, called the Women In Pain Conference: Gender Matters.

I would have told people about it before last week but, unfortunately, I had not yet been in touch with Cynthia. However, I’ll let you know what comes out of the conference, with Cynthia’s help. As well, this is the first conference and I’ll be sure to know about the next one with more advance notice for you all.

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Post from: Blisstree

Company’s calling: For Grace’s founder, Cynthia Toussaint speaks out

It’s National Arthritis Month, so it’s only fitting that today Karen Smith joins us here for Help My Hurt’s Company’s Calling feature to talk about her sudden onset of rheumatoid arthritis. Karen is a software support consultant, from Keswick, Ontario, Canada, a very small town north of Toronto.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

When I first experienced the pain, it was restricted to the index finger of my right hand. I noticed it at work when I tried to do certain things such as squeeze the stapler or type for extended periods of time. It was a mild pain, almost like I’d sprained my finger and it was sore to use, but not very sore to touch. A few days later the index finger on my left hand started to feel the same way. A few days after that, all my fingers were sore and achy and I couldn’t grip things very well.

Did you seek help right away? If so, what type of help and, if not, why not?

I sought help when the pain moved to other areas of my body. All within a two-week period the stiffness and achiness went from my hands to my shoulders to my ankles. Though my hands weren’t swollen, my ankles started to swell, and quickly. I was concerned it might be a heart problem, so spoke to my doctor’s office and got in to see him the next day. He was concerned that the symptoms were systemic, that is it wasn’t just one finger or one hand or one ankle, but that when one hand was affected so was the other; when one ankle was affected, so was the other.

His initial thoughts at the time were because I drank a lot of milk, maybe the antibiotics that are given to cows was affecting me. However he was also concerned about rheumatoid arthritis, as often times RA occurs after flu-like symptoms and the symptoms are systemic (and I had a bad case of something; the flu or food poisoning about three weeks prior). He immediately put me on an NSAID (nonsteroidal anti-inflammatory drug – called Ultradol) and referred me to a Rheumatologist. My wait for the Rheumatologist was 6-8 months, however I was able to get in on a cancellation after 7 weeks.

What did the doctors tell you when you did seek help?

My family doctor suspected rheumatoid arthritis, ordered blood work, and referred me to a rheumatologist right away. A follow-up to my family doctor showed that my Rh factor (that confirms an RA diagnosis) was not very high. However other results from the blood work caused alarm, including a lot of swelling. After approx 7 weeks I was able to see the rheumatologist. By this time I was extremely tired all the time, and my entire body hurt. I had night sweats which were awful. The rheumatologist reviewed the body work and said though my Rh factor wasn’t high enough to confirm RA, based on symptoms that I had he made the RA diagnosis. He wrote a prescription for Plaquenil (Hydroxychloroquine) and Methotrexate (these are DMARDs – Disease Modifying Anti-Rheumatic Drugs), and I was to continue with the NSAID. I also had to take Iron supplements due to anemia, and folic acid because the Methotrexate depletes the body of folic acid.

What have you tried to help you with your pain?

I’ve tried a heating pad for the achiness, ice packs for the swelling, and Ultradol (NSAID/painkiller), and Tylenol Arthritis. I’ve also tried doing gentle exercises.

Can you tell me a bit about what worked and what didn’t?

The ice packs help reduce swelling, which actually reduces some of the pain. The Ultradol and Tylenol help with pain management.

Oddly enough the gentle exercises work. Even though the movements cause a mild level of pain, I do feel a bit more range of motion movement and less pain afterwards.

How does having this pain make affect you in terms of how you live your life?

The pain I have now is much milder than when I was first diagnosed. The first 3-4 months of my RA diagnosis was very painful for me. I had to take time off work; I couldn’t type, I couldn’t grip anything so was unable to hold a fork and knife or even open a shampoo bottle. And I was always tired due to the anemia. Once the medications started to work, I very slowly started to have somewhat of a ‘normal’ life back again. It’s been 10 years since my RA diagnosis, and though I still have pain, it’s not nearly as bad and I only manage the pain now with Tylenol Arthritis (though I still take the DMARDs). I can function fairly well, though my knees and hips do get very sore if I don’t rest often. I cannot lift my left arm above my head, I cannot kneel down, and I cannot make a tight fist, but I manage to live a fairly normal life.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I wish I had done more range of motion exercises or seen a physiotherapist when first diagnosed. It may have helped me with the loss of range of motion that I have now. Though I do range of motion exercises now, I fear I’ve got the “use it or lose it” syndrome and have lost a lot of range of motion.

I would also like to try acupuncture, and tai chi. The acupuncture may help with pain management, and the tai chi will keep my body moving so I don’t lose any more of my range of motion.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

I would tell them to do as much research as possible into their situation, whatever the diagnosis. Learn what works for you and what doesn’t. Some medications don’t work as well as others. If you’re still in pain, talk to your doctor about increasing the meds, trying new meds, or even other alternatives. Sometimes the medications take awhile to work, so hang in there. And don’t overdo things. If you’re in pain, don’t try to do more than you can handle. If you need help, ask for it! I find family and friends are more than happy to help, all I need to do is ask.

Would you like to add anything?

Sometimes my pain made me cranky and irritable. I may have been exhausted from a painful and sleepless night, or was too sore to do anything and didn’t want to go out or want company to come over. Often times my friends just didn’t understand the level of pain I was in.

What I do now is I let them know my pain level out of 10, and that helps family and friends understand how much we can do that day, or that I’m in a fair amount of pain that day and may need assistance with things.

In addition, I find that stress often causes flare-ups, so I try to do my best to limit or reduce my stress (I know, easier said than done sometimes!). If I’m having a bad day, rather than trying to do too much, I’ve learned that I have to take care of myself before I take care of smaller things like housework. Those dirty dishes are still going to be dirty tomorrow, so if I don’t have the energy or am too sore to get them done today, then I’ll rest up and get them done tomorrow. I fin if I don’t take care of myself, no-one else will, and my health, well-being, and pain management is important to ME.

Thank you so much Karen for sharing your story. One often thinks not only of RA as being an older person’s disease, but one that comes on gradually over a few years. By sharing your story, if anyone else is experiencing similar symptoms, perhaps they’ll feel more confident about getting them checked.

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Technorati Tags: rheumatoid arthritis,NSAIDs,nonsteroidal anti-inflammatory drugs,Ultadol,Plaquenil,Hydroxychloroquine,Methotrexate,DMARDs,Disease Modifying Anti-Rheumatic Drugs,RA,Tylenol arthritis,tylenol,range of motion exercises,pain level out of 10

Post from: Blisstree

Company’s calling: sudden onset of rheumatoid arthritis

My lady isn’t home. There was no-one to visit with.

Please keep her company next week – if you have a story to share, email me and we’ll get going on it.

For those of you who are new to the Company’s calling feature, here are some previous Company’s calling interviews:

• Company’s calling – living with the pain of interstitial cystitis

• Company’s calling – living with migraine pain

• Company’s calling – the road to a diagnosis for endometriosis

• Company’s calling – a journey with fibromyalgia

• Company’s calling – another migraineur speaks out

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Image: iStock.com

Technorati Tags: Company’s calling,interstitial cystitis,migraines,endometriosis,fibromyalgia,migraineur

Post from: Blisstree

Company’s calling… what’s wrong with this picture?

Image: iStock.com

I was going to introduce our visitor today as a special visitor – but then again, everyone who stops by Company’s calling is special, right? But today, we do have an extra special visitor. Someone who works with World Champion cyclist Kristin Armstrong noticed Help My Hurt and offered to put us in touch. Kristin wrote this to share with Help My Hurt’s visitors. Thanks Kristin and good luck!

Putting a New Spin on Arthritis

My name is Kristin Armstrong; I’m 34 and a World Champion cyclist. I was also diagnosed with osteoarthritis nearly seven years ago. Before my diagnosis I was an accomplished tri-athlete, but my doctors thought such intense exercise would be too hard on my joints. Slowing down was not an option so I turned to cycling which is great for people with arthritis. Through a lot of hard work and determination, I am now preparing to compete as a cyclist in the upcoming 2008 Summer Olympic Games in Beijing, China. This year, I am also supporting the Arthritis Foundation’s annual Arthritis Walk events and Team TripleFlex by sharing my personal success story.

My goal is to inspire and motivate those with arthritis to stay fit and do the things you love whether it’s playing with your children or grandchildren, gardening or hiking your favorite trail.

Here are my top five tips for being active and maintaining joint health.

* Fuel It Up – Experts agree there is a special connection between nutrition and joints. A balanced diet high in antioxidants containing citrus fruits, green, leafy vegetables and omega-3 fatty acids such as those found in salmon provides active adults with the nutrients they need to maintain joint health. A balanced diet also gives you the energy you need for your favorite activities.

 

* Walk It Out – Research shows that physical activity is one of the best ways to keep joints in top shape as it helps maintain weight and build strength, which aids shock absorption and injury prevention. Walking and biking are two of the best exercises to maintain joint health.

 

* Boost It Up – For an extra boost in joint health, glucosamine and chondroitin supplements can also help. Studies show that glucosamine and chondroitin promote joint comfort and elasticity. I actually stopped taking my prescription drugs a few years ago and have adopted a natural treatment plan that works for me.

 

* Keep It Down – A study published in the Annals of Internal Medicine found that people who lost just 11 pounds cut their risk of osteoarthritis in half. Combine portion-controlled meals and plenty of exercise most days of the week to help keep weight in check. Don’t forget that walking through the mall and cleaning the house both count as exercise!

 

* Take It Further – The Arthritis Foundation’s Arthritis Walk events are held in communities across the nation to raise public awareness and funds to help people living with arthritis lead active, mobile lives. Nationally sponsored by Nature Made TripleFlex, walkers can sign-up as a team and come out to support a family member or friend.

 

Be sure to talk to your doctor before starting a new health regimen. To follow me on the road to Beijing, visit www.kristinarmstrongUSA.com. For more information on joint health options, visit www.tripleflex.com. To find an Arthritis Walk in your area, go to www.arthritis.org.

Thanks again Kristin. I’m Canadian so I’ll be a bit torn as to who to root for, but I will be hoping only the best for you. Please come by and let us know how you are doing.

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Photos: Kristin Armstrong

Post from: Blisstree

Company’s calling – Olympic cyclist Kristin Armstrong talks about her osteoarthritis

This week, we welcome Bonnie Hensley, a 50-year-old registered nurse in the Seattle area joins us. She tells me that she works 56 hours in a 2-week period (3 days one week, 4 the next) in a community hospital operating room.

She’s been an OR nurse (”all I’ve ever done as a nurse,” she says) since 1989.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

It was about two years ago or so, don’t remember exactly when. I was tired and achy all the time, no matter what I did or didn’t do. Felt like I’d been beat up, every part of my body ached and it was frequently a deep ache.

Did you seek help right away? If so, what type of help and, if not, why not?

Put up with it for a few months, thinking it would go away (yeah, right). Finally saw my primary care doc, mostly because of feeling worn out all the time. She did a few labs and a bone scan, and referred me to a rheumatologist to see if I had Rheumatoid Arthritis or something else.

What did the doctors tell you when you did seek help?

He did a thorough exam and several labs. Concluded that I did have fibromyalgia, and a type of lupus (not RLE). He told me that fibro was real, that they didn’t really know what caused it, there was no cure, but symptoms could be managed.

What have you tried to help you with your pain?

Changing my anti-depressant helped some, as did a prescription sleeping pill (it’s really bad when I don’t sleep well). I take a non-opoid pain med when the aching gets to be too much (and when I’m at work–it doesn’t mess with my brain but helps with the pain), and a narcotic at home, sometimes supplemented with a muscle relaxant. Sitting in the hot tub feels pretty good while I’m in there; whether it’s the warmth or the relaxation, I don’t know. I’ve also tried to ‘deal with it’ and ignore it.

Can you tell me a bit about what worked and what didn’t?

“Dealing with it” and ignoring it does NOT help! Fibro will NOT go away. It took me about a year to figure out that trying to fight it wasn’t working, and that it isn’t a failure to take pain meds if it makes life tolerable. The sleeping pill (Lunesta) helps, but doesn’t always help me get a good night’s rest (however, SOME sleep is better than none!). Tramadol enables me to continue to work when the pain starts to get bad. I’ll take a Vicodan when I’m at home, and when it’s really really bad I take two Vicodan and a muscle relaxant (tizanidine) and then I’m essentially unconscious for about 3 hours (but there’s no pain!).

How does having this pain make affect you in terms of how you live your life?

I don’t do as much as I used to, and I don’t have as much energy. I have to pace myself when doing things. Sometimes I have to ask for help at work or request a less physical assignment. I’ve also had to start thinking about other options in my career for the future, because I don’t know how long I’ll be able to continue doing a job I love because of the physical demands. I’m extremely lucky in that I have a very understanding husband who looks out for me and does a lot more around the house than I do.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I wouldn’t try to fight it. Accepting this thing was probably the hardest part.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Don’t give up; fibro is REAL and you shouldn’t have to suffer because others don’t know it’s real. Yes, it does change your life, but it’s not the end of your life. Don’t try to over-do on the days you feel good, because you’ll only suffer more the next few days. You aren’t a ‘failure’ if you have to take a pain pill. Don’t be afraid to ask for help. Find a support group, either one you can personally attend or an on-line group where they all understand what you’re going thru and can give you some suggestions for different ways to do things, ideas to make every-day life better, and a place to SCREAM at people if you feel like it.

Thank you Bonnie, for adding your voice to Company’s calling. As you say, fibro is real but there are many who don’t understand it. Please come back and visit to let us know how you’re doing.

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Image: iStock.com

Post from: Blisstree

Company’s calling – an RN speaks about her fibromyalgia

Jennifer, an attorney in Washington, DC, volunteered to speak to us about living with ulcerative colitis. Many people live with some sort of bowel disease, be it Crohn’s disease, irritable bowel, or others. Living with such a disease can be hard because people don’t talk about them as they might about diabetes or high blood pressure. The more awareness there is, though, the easier it might become for some to ask for help if they need it.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

About ten years ago, I was diagnosed with ulcerative colitis, a chronic disease of the colon. The physicians tried to manage the illness with drugs, but none of them worked. After 2 months, the doctors found that I had a hematocrit of 16 and sent me to the hospital. The gastroenterologist put me on a regimen of IV steroids for a couple of weeks to control the disease. It never worked, so the surgeon did a colonectomy and ileo anal pull through. This is a series of two surgeries three months apart. The surgeon removes the colon and takes a piece of the small intestine. This piece is shaped into a pouch and replaces the colon. Obviously, the pouch doesn’t work exactly the same as the colon. My digestive system experiences a lot of pain, but it varies day to day.

Did you seek help right away? If so, what type of help and, if not, why not?

I see a gastroenterologist every year to talk about different ways to make digestion more comfortable. So far, none of the suggestions have worked very well.

What did the doctors tell you when you did seek help?

The only useful suggestion was to start taking an anti-spasmotic drug regularly. It still doesn’t work completely.

What have you tried to help you with your pain?

My pain comes from digestion, so no pain medicines are going to help. Anti-spasmotic drugs help. I take Levbid twice a day. My pain is caused by eating, and you can’t stop eating. So I will have some pain for the rest of my life. Eating less than normal helps, but I love to eat.

Can you tell me a bit about what worked and what didn’t?

I’ve tried a variety of digestive aids such as fiber, probiotics, and Align. I’ve tried various drugs like Lomotil and Levbid.

How does having this pain make affect you in terms of how you live your life?

My type of pain affects the way I interact socially. I don’t eat dinner or eat a very small dinner if I know that I’m going out with friends at night. If I’ve eaten, I’ll get stomach cramps ad can’t go out. I get a lot of stomach cramps regardless of what I eat.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

No

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

I would talk to them about various medications that I’ve tried and recommend to keep working with gastroenterologists to new things.

Thanks Jennifer. Hopefully, your post will help stimulate some discussion among people about this issue. Please come back and visit again.

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Image: iStock.com

Post from: Blisstree

Company’s calling – living with ulcerative colitis

Pam, who referred to herself as a “Connecticut Yankee currently living in Israel” is another guest who lives with migraine pain. As with most migraineurs, her story is eerily familiar, yet different too.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

30 years ago, I was 20, home during the summer having finished junior college before going to university. I woke up late afternoon from a nap with what felt like a railroad spike through my left temple and left eye. I found my way to the door and was calling for my mother (instinct is strong isn’t it?) who was outside hanging up clothes. I woke up my dad in the next room who had also been taking a nap.

I knew it was a migraine. I was well-read and my maternal grandmother had them, so my mom told me.

Did you seek help right away? If so, what type of help and, if not, why not?

Took aspirin or acetaminophen, I can’t remember which, had an ice pack on my left temple and lay in the bed with the curtains drawn and the lights off. The pain passed in 2-3 hours. We went to the doctor on the following Monday, office hours ended by 1 pm on Saturdays.

What did the doctors tell you when you did seek help?

I told our family doctor what I had and he agreed. No food trigger or stress was responsible for the initial hit. We often had thunderstorms during the summer in Connecticut so if one was coming, the drop in barometric pressure could have caused it.

Over 30 years I may have had 3 auras–the flashes of light that 1 in 5 migraine sufferers get but it’s a phenomenon that is interesting and makes the news over the mass that don’t get them.

Pretty much the response in the last 3 decades has been: ‘Try this — fill in the blank.’ Pharmaceutical companies push their drugs as cure-alls but only 1 out of 5 people get any relief though all 5 pay for a drug that is useless to 80% of them. Doctors are poor at pain management and prefer to think that anti-depressants will stop pain which actually makes it worse since I’m taking the stuff, I still have the headaches and I’m more depressed! When I told doctors about a drug they proposed, ‘I tried that already’ the doctors’ response was, ‘let’s try it again’. Oh yes, and they accuse long term sufferers as being pill junkies and addicts. That was always helpful, NOT!

What have you tried to help you with your pain?

Drugs, diet changes, meditation, acupuncture. I had an MRI and CT scans so the good news–nothing there, the bad news–nothing there to fix…

Can you tell me a bit about what worked and what didn’t?Beta-blockers and calcium channel blockers did nothing, blood pressure regulators and steroids were useless.

Drug wise I took: Cafergot, Inderal, Elavil, Fiorinal, naproxen sodium, Depakote, Sansert, Pheyntoin, Lithium, Amitriptyline, Prozac, Butabital, Alprazolam, Midrin, Axocet, Chromagen, Percocet, Atenolol, Ultram, Deltazone, Prednisone, Neurontin, Acetazolamid, Verapamil, Trazedon, Stunarone, Tegratol, Topamax, and Imitrex. Compazine for the nausea did its job. Tylenol with Codeine #4 is the only thing that reduced the pain level by 25% or so.

Topamax actually caused auras and dizzy spells. It also changed the taste of artificial sweeteners to a sour taste so I was off my diet sodas.

I had been a guinea pig at a headache clinic in Stamford to try the injection of Imitrex when it first came out. It did nothing. Neither did the Imitrex inhaler or the pills.

Reiki helps when I can’t sleep for the pain.

How does having this pain make affect you in terms of how you live your life?

In my later 30s, I had gone back to college to take courses to become an RN, changing my career from a graphic artist. Due to either the headaches or the side effects of the drugs, I had trouble focusing and I missed classes. I had graduated Summa Cum Laude at 21, now my memory was bad, my handwriting changed–not that it was good but even I couldn’t read my notes and I had to stop my dream. Eventually I had to quit work and returned home because I couldn’t afford to live in my own place any more. I went on disability and live my life around the pain.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I’ve tried many things and read up on even more. I do believe it’s a good idea to rule out physical problems by getting an MRI and a CT scan. My food trigger is dried beans/peas. They have a natural mold on them, like the silvery mold on plums or grapes. Dried peas and beans in soups etc will cause a massive headache for me in 20 minutes or less. Low barometric pressure is also a cause: I can feel the storm coming in my head. Menstrual changes and hormone levels just before my menses will give me a migraine. Cleaning chemicals can be a trigger so can fluorescent lights that are felt by the brain though the eye doesn’t see the cycling energy. Caffeine sometimes helps, chocolate is not a trigger for me. My triggers are: moods, foods, stress and PMS. Meditation, subsisting on brown rice, moving to the desert and getting a sex change is not realistic, though it is possible. I’m hopeful that with menopause I’ll lose a quarter of my triggers.

I still won’t get a Botox injection. It’s poison derived and I’m just not comfortable with that. Granted most medicines can be toxic in the wrong dose and in lethal combinations, but I’m not going to take a risk with botulism in my head.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Migraines are different in each person, the headaches have different triggers, sometimes multiple triggers. Control what you can in the way of foods, cleansers, lighting for work and home, with whom you associate, and how you react to stress. Finding what works can take decades, the triggers will change too. Be informed, many drugs to prevent headaches can also cause them.

Would you like to add anything?

Since leaving the workforce, I’ve discovered my writing voice. I can channel my pain and aggression into characters, I can make worlds, and I can cope.

Thanks for sharing your story Pam. It’s hard when we have tried so many things to manage the pain – all we’re asking for is *1* thing to work!

If you have a story about living with pain and would like to share it in a future Company’s calling – please let me know. Anyone is welcome – even if you think your story isn’t interesting, it most likely is!

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Image: iStock.com

Post from: Blisstree

Company’s calling – another migraineur speaks out