National Fibromyalgia Association: Building Your Own Support System

National Fibromyalgia Association: Building Your Own Support System

By: Renee Grindstaff

Reposted from FMOnline

“No one understands what I’m going through.” “I feel so alone.” “I wish I could meet someone who knows what life with FM is really like.” The path of chronic illness can be a lonely one, but you don’t have to be alone. There are many ways for you to involve yourself with other people who are going through the same thing. FM isn't easy to handle on the best of days, but having understanding friends on the journey with you will make your good days better and your bad days a little less bad. When I was first diagnosed with fibromyalgia, I thought I was the only person in the world with a chronic illness. My friends and family couldn’t understand what I was going through, and I felt so alone. The day I made my first friend at an online message board was one of the happiest days of my life. Someone knew what it was like to be me! Over time, I have created my own support system: a network of caring friends who give me the encouragement and support I need to help me get through the flare-ups, medication side effects, and emotional issues of living with chronic pain. My support system has changed my life. Knowing I have friends to turn to who understand really bad days, sleepless nights, and endless doctors’ appointments has made all the difference in how I cope with FM and arthritis. Trying to deal with FM on your own can be extremely isolating. “I felt like I was the only one who was going through this, and no one could understand what I was going through,” says Kellie Fite, who lives with fibromyalgia and chronic fatigue syndrome. Finding sympathy from healthy friends is also often a problem for people with chronic illnesses. Rachelle Skinner, another fibromyalgia patient, says that before she found a support group, “No one would believe that I was that sick." Seeking out others with comparable health problems can keep us from feeling so misunderstood and lonely. Nobody understands the frustration and anger caused by the betrayal of your body better than someone in the same situation. When you have a support system that really relates to your problems, you know who to turn to when you are so exhausted that just getting yourself out of bed feels like too much work. These people understand because they have been there and they will be there again. They are dealing with the physical and emotional hardships of life with chronic pain, just like you. You may even notice physical benefits associated with having friends who understand you. Feeling isolated and alone can increase stress and tighten up muscles, causing additional pain and anxiety. Once you’ve found a group of people to connect with, you may find your body relaxing as the tension of loneliness eases away. “Just knowing someone else out there feels like I do is such a help,” says fibromyalgia patient Marie Ritzel. A support group is a fantastic resource for FM patients. It connects you with others who are being treated for FM, and provides a place to exchange information on various medications and their side effects, alternative treatment methods, and natural supplements. The suggestions offered in a support group environment are methods that have been tried in the crucible of daily pain. A support group also makes the search for a new doctor or physical therapist much easier, because you have an easy source for recommendations. Support group participants may also exchange coping strategies for dealing with the emotional side effects of having a chronic illness. “We talk about what works and what doesn’t,” Ritzel says about the fibromyalgia support group she leads in Tillamook, Oregon. “We can ask questions and we can cry together…it is a safe place to cry about the pain.” Local support groups may also feature speakers addressing various topics of interest: physical therapists discussing exercise programs, physicians talking about improving doctor-patient communication, or nutritionists sharing information about healthier diets. There are numerous psychological and spiritual benefits to being part of a support group. “When I have a particularly hard day, I can write these people and they are there for me,” says Fite, a member of an online support group for women with fibromyalgia. “They are like family.” Rachelle Skinner, another support group member, notices a special bond that forms between people who live with chronic pain. “When you join a support group, you can meet people just like you and make lifelong friendships.” Ready to start building your own support system? A good place to begin is by finding out what kinds of support groups are available in your area. The National Fibromyalgia Association has a list of support groups on its website. You may want to contact the local Arthritis Foundation chapter, your doctor’s office, physical therapy center, or hospital. Check in the newspaper, ask around, or do an internet search. There are support groups for specific illnesses, and also those that welcome people with any sort of chronic pain. Explore all of the different environments available to you and see what fits best with your life and needs. Not into the support group environment? There are still plenty of ways to get involved with other people. Exercise classes are a great way to take care of your body and make some new friends. Most YMCAs offer classes geared toward people with health problems. Or try volunteering for an organization that raises public awareness on chronic illnesses. If you’re already spending hours in the waiting room of your doctor’s office before an appointment, why not try starting a conversation with another patient? You may have more in common than you realize. And since most people love to talk at length about their symptoms and treatments, you’ve already got an easy conversation starter. Are you living in a rural area, house-bound, or just don’t have the time and energy to spend on the social scene? You don’t have to go any farther than your computer for support. There are hundreds of online communities for FM patients—small groups and large ones, with members spanning the globe or located in the same area. Most online message boards are very easy to use, and usually provide a help section for those who are just getting started. When joining an online community, be prepared to make the first move. Post a message or send an email introducing yourself. Ask questions. Respond to other people’s messages. Make friends by being one. Online communities connect people in various parts of the world, so if you are looking for a face-to-face support system, you may want to start elsewhere. However, one of the benefits of online support is that it is always there. You can access it anywhere and anytime. When you’re having a bad day, you can let your online friends know and they may respond to your message right away, sending words of encouragement or tips on how to make yourself more comfortable. You may have to try several different things before finding a place that feels right to you. I started out posting messages at some larger forums for people with various types of illnesses. I made a number of friends through an electronic pen-pal service, and am now a member of a smaller online support group. The women in my support group are closer to me than many of my local friends. Even though we are miles apart, the empathy, understanding, and experiences we share bind us together in a unique and deeply meaningful way. Does the idea of building your own support system seem overwhelming or make you uncomfortable? Listen to the voices of those who have already traveled that road. “Don’t wait one more minute to join a group,” urges Skinner. “Since joining a support group I have found the love and support I need to get through the day.” “Take the time to do this. At first it can be awkward, but over time when you help others and they help you, you start bonding and feeling close to them,” says Fite. “It gets to a point where you feel like they are your complete support system.” The most important advice I can offer to you in building your own support system is this: reach out. It may not be easy to create a support system for yourself, but it will definitely be worth it. Take the time. Make the effort. Get to know some new people. Try different things until you find a place where you fit in. Once you’ve built your own support system, you’ll never look back.

More than just a headache

I've had migraines for about 24 years. I've had tension headaches. I've had "spinal" headaches from getting injections directly into my spine. I've had headaches caused by the whiplash, which was caused by the car accident.

But I've never had headaches like the ones I've been suffering from lately.

About a month ago, I started having pain on the right side of my face. It started out along the upper jaw, then wound its way down through my mandibular joint and across my lower jaw. It took over my ear and I could feel it like an ice pick deep inside my ear canal. The pain, which I can only describe as the most excruciating pain I've felt thus far, traveled up the side of my face, through my temple, and into my skull.

This all happened really fast and has been ongoing, never ceasing, for a whole month. Sometimes the pain isn't as intense and horrendous; and other times, like last Thursday, I end up with my head in my hands screaming about how it's killing me. Literally killing me. I thought the aneurysm was going to pop and that was going to be the end of me. I was just screaming, waiting, and praying for the end to come quickly.

Now, I don't know if I really have an aneurysm. The idea of one has always scared me. I don't know if it's a brain tumor. I don't know if there is any cause at all to the horrifying pain I've been experiencing. I've had a CT scan, but my doctor is currently "out" so I've requested a copy of the results so I can find out without having to wait for her.

Right now, it is just being referred to as Trigeminal Neuralgia. Trigeminal Neuralgia is pain in the Trigeminal nerve, which comes down from your skull, through your temple, and branches off into three areas of the face: the eye, the upper jaw, and the lower jaw. I have done some research (as I normally do) and found a picture of the face and where the Trigeminal nerve is located. It didn't surprise me that the nerve is located in the exact areas in which I am having pain. In fact, it seems that my entire right-side Trigiminal nerve is affected.

The Trigeminal nerve is represented as yellow in this picture.

I read somewhere (and I promise to post a link as soon as I find where I bookmarked it) that, while TN is rare, it is not so uncommon in people who suffer from Fibromyalgia. That's way too many algias, if you ask me. The Facial Pain Association states, "Trigeminal neuralgia (TN) is not fatal, but it is universally considered to be the most painful affliction known to medical practice.  By many, it's called the "suicide disease."

Having experienced this pain for the past month, I believe that statement wholeheartedly.

If you start experiencing this facial and head pain, please see your doctor immediately. While it is thought to be caused by an expanding blood vessel pressing against the nerve, the true cause remains unknown. It is best to have a CT scan or MRI to rule out aneurysms or tumors or something else entirely. There is a lot of information on the Internet regarding Trigeminal Neuralgia and myofacial pain. Read up, print out, and take that information to your doctor.

I will keep you all informed on my results and how this all plays out.

Gentle hugs,
Jessica

Empowering people with disabilities: Knowledge

Department of Labor's Office of Disability Employment Policy's 

Job Accommodation Network (JAN)

Accommodation and Compliance Series: Employees with Fibromyalgia

Accommodation and Compliance Series: Employees with CFS

JAN’s Accommodation and Compliance Series is designed to help employers determine effective accommodations and comply with Title I of the Americans with Disabilities Act (ADA). Each publication in the series addresses a specific medical condition and provides information about the condition, ADA information, accommodation ideas, and resources for additional information.

Is a FMS/CFS a disability under the ADA?

The ADA does not contain a list of medical conditions that constitute disabilities. Instead, the ADA has a general definition of disability that each person must meet (EEOC, 1992). Therefore, some people with FMS will have a disability under the ADA and some will not. 

A person has a disability if he/she has a physical or mental impairment that substantially limits one or more major life activities, a record of such an impairment, or is regarded as having such an impairment (EEOC, 1992). For more information about how to determine whether a person has a disability under the ADA, visit http://askjan.org/corner/vol02iss04.htm.

Fibromyalgia and accommodations under the Americans with Disabilities Act

This a quick overview of some of the job accommodations that might be useful for people with Fibromyalgia and CFS. For a more in depth discussion, access JAN's publications at http://askjan.org/media/atoz.htm. To discuss an accommodation situation with a consultant, contact JAN directly.

JAN's Searchable Online Accommodation Resource for Fibromyalgia

JAN's Searchable Online Accommodation Resource for CFS

A comprehensive list of all JAN publications.

Remeber: Knowledge is power.

Gentle hugs and always be learning,

Jessica

So I'm trying to win a Nook...

If you don't know what a Nook is, it's an electronic book reader much like Amazon's Kindle. It is much more versatile, however. And, the thing is, I've wanted one for quite a while.

My Fibromyalgia has advanced (or deteriorated) to the point that I'm unable to hold even a paperback. As I've been an avid reader since the 2nd grade, having my ability to read books taken away from me is more than I can bear. All I can do these days is read and peruse the Internet. Even typing a simple, short message such as this one takes a lot out of me. But reading has always been my first love and I don't want it taken away only because I can't hold a book long enough to read a single page.

The Nook is lightweight and weighs less than a paperback book, so I'm thinking it is exactly what I need. I was supposed to get one for Mother's Day, but with the looming foreclosure, rising medical costs and general cost of living, it was just not meant to be. So the only way I'm going to get one is if it's giving to me. And since they are giving this one away, I would like the chance to win it.

So I'm asking - nay, begging - for your help to win a Nook from a contest hosted by a website called backmybook.com. All you have to do is click on the link. There is no registration or purchase necessary. Just a simple click will gain me points to winning the competition.

fmslife recommends Ancestor on http://backmybook.com

Gentle hugs, gentle reader,

Jessica

A Better Way to Rate Your Pain!

From Hyperbole and a Half:

Print this out and take it to your next doctor's appointment. When asked to rate your pain on a scale of one to ten, use this visual representation and the accompanying descriptions. This "10-scale" is so much easier to explain.

1:  I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2:  I probably just need a Band Aid.

3:  This is distressing.  I don’t want this to be happening to me at all.

4:  My pain is not fucking around.

5:  Why is this happening to me??

6:  Ow.  Okay, my pain is super legit now.

7:  I see Jesus coming for me and I’m scared.

8:  I am experiencing a disturbing amount of pain.  I might actually be dying. Please help.

9:  I am almost definitely dying.

10:  I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers:  You probably have Fibromyalgia.  It appears that you may also be suffering from Stigmata and/or pinkeye.

Gentle hugs and wishes it was just itches,

Jessi

Not ready for the straight jacket yet, Doc.

I saw a new doctor yesterday. I'd been putting it off for so long and I don't know why. My primary care doctor of 12 years has been pushing me to go to Texas Tech because they have a new pain management facility in our area. He gave me the referral in August and I only just called on Tuesday.

I guess I'd just given up that anything could be done to help me. But, of late, the pain has been so unbearable that I could not put if off any longer. There was also the nervous breakdown I feel is imminent and my mother's gentle pushing (love you, Momma!) that made me realize something needed to get done -fast .

So, I went. Honestly, I don't even know if the doctor I saw today was a pain management specialist or a general practitioner. First I spoke with a 4th year medical student (totally cute! And me looking so frumpy! Shit!). He took my medical history and talked about my symptoms and that took about 45 minutes. I made sure to tell him every detail of my pain, what triggers it, how most times nothing triggers it, how it feels like my bones are being crushed, and I can't turn my head to the right without considerable pain, etc. Every sorry detail.

When my new doctor came in, he had already been filled in on everything by cute Dr. 4th Year. We talked about medication I've taken (I took in my empty Rx bottles to show what I've taken, the dosage, etc - I didn't want there to be any question); we talked about what worked and what didn't, how long some meds worked and the bad reactions I've had to others. Then he put his hand on my shoulder and said, "I'm going to help you."

"I'm going to help you."

I have never had a doctor tell me that. Usually it's me asking, "Will you help me?" or something to that effect. But he was sincere and seemed confident that he was, indeed, going to help me.

Then he started talking to me about my depression. I explained I've been depressed pretty much my entire life. He asked if it was worse now and I agreed it was, stating, "When you're in pain 24/7, it gets rather depressing." Hand on shoulder again, he says very softly, "I know."

Of course, this is when I start crying.

At that point he asked me if I was suicidal. I didn't say anything at first, as he was giving me a look that said, "You can trust me." I told him I frequently thought of death and dying (frequently being pretty much all day, every day), but I wasn't going to kill myself. Then I added, "I just wish a meteorite would come down and kill me instantly. I won't take my own life. I just wish something beyond my control would."

Dr: It's hard to live with the pain, but you won't kill yourself because you have people who love you.

Me: Exactly.

I guess he trusted me, because I'm not under 72-hour observation at our local state psychiatric hospital (where my uncle works, incidentally - I could have been hanging out with him for the next three days).

He tells me again that he's going to help me. He's going to request my records from my 12-year primary care doctor (I wonder if this means we've broken up), then I am going to return to see him in three weeks. But for now, take this extra-strength Vicodin for the pain, along with the usual Rx regiment, and relax. Relax because he is going to help me. We'll run tests and panels and take MRI's and CAT scans and everything will be ok. He just wants to see my records first.

Dare I hope that this doctor knows his shit? Dare I hope at all? How many times have I been let down by doctors in these years of constant pain? Only to find one about 5 miles away from my home who understands, cares, and promises to help? What are the odds?

Gentle hugs and shine on you crazy diamond,
Jessi

P.S. Totally unrelated: I spend a lot of time playing on Tumblr, which is kind of blog site in a totally different way. If you have a Tumblr account, I'm HERE. Feel free to follow! Send me a message and I'll follow you, too. I also spend a lot of time on Goodreads and you can see my profile HERE. If you're a member or reader who would like to join, please feel free to send me a friend request. Next month's group read will be The Plague by Albert Camus. Would you like to join me?