Interview April – Amber Blackburn

Let’s welcome our next guest, the adorable Amber Blackburn!

AmberBlackburn

Introduce yourself and tell us a bit about you…

Hi y’all! My name is Amber Blackburn, I am 33 (almost 34) and live in the middle of the United States.  I am a Registered Nurse by trade who is now a Chronic Illness Blogger and Advocate due the fact that my health has declined to the point that I can no longer work a standard job!

Chronic illness(es)/disabilities I have…

Way too many for someone my age!  I don’t even know where to start!! I have Systemic Lupus (SLE), Fibromyalgia, Bertolottis Syndrome, IBS, Anxiety, Depression, Endometriosis, Interstitial Cystitis, Secondary Adrenal Insufficiency due to long term steroid use, POTs, Debilitating Migraines (Some of which are hemiplegic). I think that’s all my conditions. Or at least the important ones. I will note that many of my issues alone are not disabling but in combination with all the others they can be.

My symptoms/condition began and My diagnosis process was

I am going to combine these two questions as it makes my response easier.

I was admitted to the hospital for a respiratory illness in February 2012. I was in the hospital for 5 days and they could never really figure out what was going on. So I was put on high dose steroids and antibiotics and was told that would probably fix it. Over the following months more symptoms started showing up beyond the respiratory issues like extreme fatigue, joint pain and joint swelling. They had done all kinds of labs up to this point and nothing had shown up. But finally my Pulmonologist did a repeat ANA and lupus markers in April 2012 and they came back very positive. The joint pain and swelling continued to worsen to the point that I had to buy bigger shoes and could hardly walk.

So I saw a Rheumatologist in the summer of 2012 and was diagnosed with Systemic Lupus and Fibromyalgia. But looking back my symptoms go back to the late 90s, early 2000s. During my junior year of High School in 2001 I was diagnosed with Mono and it lasted SIX months, which does not happen. So we are pretty sure part of that was actually my first lupus flare. My official Endometriosis and Interstitial Cystitis diagnosis was in November 2011 but those symptoms went back to 1998 when I started having such horrible abdominal pain that no one could diagnose and blamed it on IBS.
The hardest part of living with my illness/disabilities is…

If I am being 100% honest the hardest part of living with my illnesses is not always dealing with my health. Outside of the pain and fatigue when they get really bad, I find the hardest part to be the social aspects. This may sound silly but it’s super hard to have to stay home all winter because you pick up every germ despite wearing a mask and washing your hands. It’s hard having to cancel plans because you don’t feel good enough to leave the house. Also, trying to explain to those who aren’t sick why you are canceling for the third time this month is awful and hard on relationships. For me (and surely others) the social aspect is probably the hardest part of living with a chronic illness, outside of the obvious health issues.

A typical day for me involves…

A typical day for me starts with me waking up and rolling over and stretching. Trying to see what hurts and what doesn’t. Then spending the next 10-15 min actually getting out of bed because if I don’t do it slowly I’ll pay for it later. What happens after that depends on the day. If I have a doctors appointment or somewhere to be, I will start the getting ready process which can take 10 mins or an hour depending on how I feel, and how ready I need to be. As well as how many breaks I will need to take. If I don’t have anywhere to be I go straight upstairs to eat and take care of my dogs. In the morning I will always be checking social media and do my daily posts (that sometimes become 3 times a week posts) on all my platforms.

I will most likely be writing for my blog and posting if it’s a day to post. I try to write something for the blog everyday, that way I don’t feel rushed at anytime because I don’t have anything written. I may not get a whole piece written every day but I try to write something. There is always an afternoon “nap” if I can’t get comfortable and sleep than I at least lay in bed and rest. And the evenings are usually pretty chill. Generally speaking, I spend the evenings watching a show or reading a book. I take a shower and try to be in bed by nine. When I fall asleep will depend on what I did that day and how much pain I’m in. Everyday is different for me because I never know how I will feel. I always know if I did a lot the day before that the next day will be a day of rest. Honestly, I can’t plan to far in advance because I never know how I will feel.

The one thing I cannot live without is…

I hate to admit this, my phone.  I say this because I use my phone for everything. I use it for communication, with my friends, family and medical providers. I use it to help run the Chronic Illness Support Group on Facebook (Lupie Groupies) I started about 5 years ago which continues to grow. I use it to blog, to research, and post on social media. And I use it for my jobs, I sell Senegence Makeup as well as the Chronic Illness Symptom Tracker that I created for those with chronic illness.. For those reasons my cell phone is important to me.

Being chronically ill/disabled has taught me…

Being chronically ill has taught me so so many things. But I honestly think the biggest thing is that being sick has a way of showing you who your true friends (and family sadly) are. I know it sounds cliche but it’s very true.

What advice would I give someone recently diagnosed…

The biggest piece of advice I would give to someone who was recently diagnosed would be to find a support group!  No matter if it is online or in person, just find one. Your friends and family are good to talk to, but a support group filled with people in similar situations is imperative for anyone newly diagnosed as well as for those who have been ill for many years. A support groups gives you a place where you can share what is really going on and know that you are talking to people who will understand and won’t judge you.

My support system is…

My support group is AMAZING!! I have the most amazing family and group of friends a person could ever ask for. If I didn’t have my family I don’t know where I would be right now. I am truly lucky.
If I had one day symptom/disability-free I would…

Go to the beach or lake (really any body of water) and spend the day outside playing in the water without the fear of a flare.

One positive of having a chronic illness/disability is…

One positive thing about having a chronic Illness is meeting a group of wonderful and amazingly strong people whom you would have probably never met had you not gotten sick.

My social media links are:

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Fibromyalgia and Pet Therapy

Fibromyalgia and Pet Therapy

pet-therapy

Fibromyalgia can be a lonely disease. Staying connected with friends and family becomes difficult when chronic pain and fatigue make it hard to get out and about like you used to. Sometimes, having a pet can make all the difference in the world!

Not only will a furry friend give you some companionship, but it turns out that pet therapy can actually be a pretty effective way of dealing with fibromyalgia pain. Here’s how it works.

What Is Pet Therapy

Pet therapy is a guided interaction between a person and a trained animal. It also involves the animal’s handler. The purpose of pet therapy is to help someone recover from or cope with a health problem or mental disorder. Basically, it involves using specially trained animals like cats and dogs to provide comfort to people who suffer from diseases like fibromyalgia, cancer, dementia, etc. The animals provide companionship while the patient pets or plays with them, reducing the amount of stress and pain they feel.

The biggest concern when it comes to pet therapy is making sure that the animals are well-trained and vaccinated. Because pet therapy is often done in hospitals, doctors want to be sure that a dog won’t get loose and run around contaminating the area.

With that being said, pet therapy, when done by a professional, is perfectly safe and can be very effective in treating fibromyalgia pain.


What Are The Benefits Of Pet Therapy?

Pet therapy builds on the pre-existing human-animal bond. Interacting with a friendly pet can help many physical and mental issues. It can help reduce blood pressure and improve overall cardiovascular health. It can also release endorphins that produce a calming effect. This can help alleviate pain, reduce stress, and improve your overall psychological state.

How Can Pet Therapy Ease Fibromyalgia Pain?

While the idea that simply petting a cat or dog can actually help your fibromyalgia pain seems a little far-fetched, there’s some basic science that backs it up. You see, petting an animal has been shown to cause your body to release lower levels of cortisol, which is the hormone linked to stress. And cortisol levels are directly linked to the amount of pain people with fibromyalgia feel.

And in addition to helping deal with your fibromyalgia pain, pet therapy also has other benefits. Depression and anxiety are both common among people with fibromyalgia, and it turns out that pet therapy can also help significantly with those symptoms. People who engage in pet therapy report consistently lower levels of stress and anxiety than people who don’t. There’s something about stroking a companion animal that lends a level of comfort to people who are suffering.

And taking care of an animal also helps people with fibromyalgia get more involved in daily life. Taking the animal on walks or playing with them in the park are great ways to coax yourself out of bed. And that’s especially true on days when your fibro pain makes you want to just close the curtains and go to sleep. So, a therapy animal can even be a link to the rest of the world when you have fibromyalgia.

So pet therapy can not only help you reduce your fibromyalgia pain, it can help you feel happier and less anxious.

How Can You Start?

Your doctor or therapist managing your treatment will administer pet therapy. A trained handler, often the pet’s owner, will take the animal to every meeting and work under your doctor or therapist’s direction to help you reach your goals. In most cases, the handlers work as volunteers. Discussion of proper pet handling is needed to ensure the safety of both the person receiving treatment and the pet.

Or if you prefer, you can also purchase your own animal that has been trained to be a therapy animal. There are lots of different breeders and trainers. And one should be able to help you find what you are looking for. A quick google search should be enough to find some in your area.

So maybe you’re the kind of person who hates having to leave their loyal pet behind. Well, getting them certified to provide therapy means that you can get comfort from them anywhere you go. And that can be a great thing when you’re suddenly struck by a fibromyalgia flare-up during your daily routine.

Animals make great companions, and it turns out that they might actually be great for treating fibromyalgia pain too. So if you’re tired of trying side-effect riddled medications, some alternative pet therapy may just be for you.

Outlook

The success of pet therapy depends on establishing realistic goals and expectations and meeting those goals. You and your doctor or therapist will establish these goals at the beginning of your treatment. You’ll also discuss how to reach those goals and how long it will take.

Your doctor or therapist will monitor your progress and help you stay on track to meet your goals. If your progress is slower or faster than expected, they may alter your treatment plan.

Gastroparesis Is A Slow Go

One of the many conditions I live with is called Gastroparesis. Gastroparesis means paralysis of the muscles of the stomach. Gastroparesis results in delayed emptying of food from the stomach into the small intestine. It can be minor or quite severe; in my case, I have a moderate degree of paralysis, and the food sits for 2-3 days before being processed further in the digestive system.

feat-gastroparesis

I wasn’t aware there was a problem at first as the usual signs of Gastroparesis are nausea and vomiting. I didn’t suffer from either of those, but I did experience a lot of bloating. It felt like whatever I ate just sat there in my belly forever.

Some of the causes for Gastroparesis include:

There are many symptoms of gastroparesis, including:

  • Heartburn or GERD
  • Nausea
  • Vomiting undigested food
  • Feeling full quickly when eating
  • Abdominal bloating
  • Poor appetite and weight loss
  • Poor blood sugar control

Some of the complications of gastroparesis include:

  • Food that stays in the stomach too long can ferment, which can lead to the growth of bacteria.
  • Food in the stomach can harden into a solid collection, called a bezoar. Bezoars can cause obstructions in the stomach that keep food from passing into the small intestine.
  • People who have both diabetes and gastroparesis may have more difficulty because blood sugar levels rise when the food finally leaves the stomach and enters the small intestine, making blood sugar control more of a challenge.

HOW DO THEY TEST FOR GASTROPARESIS

To diagnose gastroparesis, your doctor will review your symptoms and medical history. He or she will also give you a physical exam and may order certain blood tests, including blood sugar levels. Other tests used to diagnose and evaluate gastroparesis may include:

  • Barium X-ray: You drink a liquid (barium), which coats the esophagus, stomach, and small intestine and shows up on X-ray. This test is also known as an upper GI (gastrointestinal) series or a barium swallow.
  • Radioisotope gastric-emptying scan (gastric scintigraphy): You eat food that contains a very small amount of radioisotope (a radioactive substance), then lie under a scanning machine; if the scan shows that more than 10% of food is still in your stomach 4 hours after eating, you are diagnosed with gastroparesis.
  • Gastric manometry: A thin tube that is passed through your mouth and into the stomach measures the stomach’s electrical and muscular activity to determine the rate of digestion.
  • Electrogastrography: This test measures electrical activity in the stomach using electrodes placed on the skin.
  • The smart pill: This is a small electronic device that is swallowed. It sends back information about how fast it is travelling as it moves through the digestive system.
  • Ultrasound: This is an imaging test that uses sound waves to create pictures of body organs. Your doctor may use ultrasound to eliminate other diseases.
  • Upper endoscopy: This procedure involves passing a thin tube (endoscope) down the esophagus to examine the lining of the stomach.

I underwent the Radioisotope gastric-emptying scan. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die.

DAY OF TEST

On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of the sandwich, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.

The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!

The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked my Doctor if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try to exercise a bit more.

If you’re experiencing symptoms of Gastroparesis, please make an appointment to see your family doctor as soon as possible. There are treatments available and you won’t have to put up with the suffering. Thanks for reading and remember…

There Is Always Hope

Fifty Reasons To Keep Going

If you are going through a hard time right now, I want to give you 50 good reasons why you need to be strong and why you need to stick around.

  1. You are a soul worth having on this earth
  2. Long hugs (my favourite)
  3. Cute baby animals
  4. You are so loved
  5. Staying up all night just to sleep in
  6. Making babies smile and laugh
  7. Sharing secrets with your best friends
  8. You will be missed
  9. Sunsets
  10. Late night phone calls
  11. Cuddling
  12. You are needed
  13. Doing stupid stuff with your best friends
  14. Laughing so hard that you cry
  15. Seeing yourself recover
  16. Crunchy leaves
  17. Knowing all the lyrics to a song
  18. Stargazing and cloud watching
  19. You are important
  20. Tomorrow is a new day.
  21. Chocolate exists.
  22. There are people out there who truly love you.
  23. At least a thousand other people at this very moment feel sad, too — you’re not alone.
  24. There’s help out there no matter how big or small your problem is.
  25. There’s music out there that totally captures what you’re feeling, which means you’re not the first or last to feel it.
  26. Everything is temporary.
  27. Unconditional love exists.
  28. Puppies.
  29. Nobody else knows what they’re doing either.
  30. Trying never hurt anyone.
  31. Smiles are contagious.
  32. You have a right to feel what you’re feeling.
  33. Anything can happen with a pen and blank sheet of paper.
  34. You’re not this person.
  35. Animals love you no matter what.
  36. The best lessons come from the worst mistakes.
  37. Netflix has so many shows you need to watch.
  38. All good love stories have a “goodbye” before the happy ending.
  39. Just being alive means you’ve beaten the odds.
  40. There’s a plethora of cliche quotes to make you feel better.
  41. Like “Nothing worth doing is ever easy.”
  42. And “Quality is better than quantity.”
  43. Also, “Everything happens for a reason.”
  44. Whatever you’re going through is making you “you.”
  45. Nothing feels better than a good cry, so don’t feel bad about it.
  46. You will always have control of your choices.
  47. Forgiving does bring healing.
  48. Simba lost everything and still became king of the jungle.
  49. You’re becoming stronger every moment you pick yourself back up.
  50. You’ll be OK.

Please reach out for help if you need it.

Text CONNECT to 741741 in the United States or phone:

1-800-273-8255

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In Canada

Call 911 or use the following link for help in your province:

https://suicideprevention.ca/need-help/

 

There is always hope

Fibromyalgia and Loneliness

Having a chronic illness like Fibromyalgia can be a very isolating experience. Many of us used to work and found a lot of our social life revolved around our jobs, whether it was getting together with the gang after work for drinks or volunteering with a workgroup for a community project. Often, a best friend was made at our jobs whom we would hang out with more frequently, and those sorts of friendships became treasured relationships to us.

group-work-best

After you become chronically ill though, you often have to give up working, and those relationships no longer exist, not even with the “best friend” that you made. How do you handle the loneliness that comes from that? We tend to not go out a lot in the first place, because of pain and fatigue, so without a reason to get together with former co-workers, there’s now more reason to isolate ourselves than ever. It’s depressing to know that you’re no longer “part of the gang”  and that you don’t fit in anymore. It’s even more depressing to know that your former friends don’t even realize that they’ve shut you out. It’s just the natural progression of you no longer being at the job, and nothing personal.

Reaching Out

But what happens when you try to reach out, to make plans, and people don’t return calls? Or when people reach out to you, but you’re unable to go, because their plans are too ambitious for you? I’d love to see people for coffee, but they always want to combine it with shopping followed by dinner and drinks afterwards, and that’s too much of a day for me. Lunch and shopping, I can do that on a good day, but then I want to go home. And if it’s a bad day, then I have to say no right from the start. And what happens if I start having too many bad days when friends want to get together? They stop calling, period. I am “too sick all the time” and no longer any fun to be with.  It’s easy to get depressed when this happens.

180418lonelymum

It’s so frustrating when friends give up on you. I can’t control my good and bad days. I have no idea when a good day is going to go bad. I can feel great in the morning and then start to go downhill by the early afternoon. I try to explain that to people, but they don’t always understand how unpredictable Fibromyalgia can be. Sometimes it can change from hour to hour and even minute by minute. It’s like going outside in changing weather and never being sure of how many layers you should wear. Will you be too hot, too cold or just right? And what do you do with all those layers if you don’t need them?

There’s also the other side of the coin though. What if your friends continue to invite you out, but you keep turning them down? Your reasons seem valid; you’re in pain, it’s too much of a hassle, the weather is too difficult, you’re tired, or you just don’t feel like it. It’s easy to make excuses, but you also need to search the real reasons for saying no. Are the reasons you’re giving valid? Or are you turning down invitations because of depression?

Signs to Watch Out For

How do you know if you’re becoming depressed or socially isolated? Here are some signs to watch for:

  • Being less motivated to leave your home
  • Feeling more anxious or worried when leaving the house
  • Declining invitations from friends or family to meet or attend gatherings
  • Planning fewer social opportunities for yourself
  • Ignoring supports when they reach out to you
  • Seeing only negatives associated with social connections

If you recognize any of these symptoms, please see a doctor in order to be treated appropriately. If you want to be more socially active, but find your friends are not as available as they’ve been in the past, the following suggestions might be helpful for you:

  • Volunteer with like-minded people
  • Help out in an animal shelter
    34437-full
  • Take up a new hobby
  • Join a support group (in person or online)
  • Join a Social Group in your City (look on Craigslist)
  • Keep a journal – it can help put things in perspective

Loneliness can be hard to deal with, but with the right understanding and support, you can overcome it. Make sure you’re staying in touch with people and not isolating yourself, and reach out to others if your friends have stopped reaching out to you. It’s okay to move forward and make new friends. Listen to your body and do what’s right for you. If you’re feeling up to it, go out and make new friendships through volunteer work or so social groups. If you need to take a break from socializing, that’s fine. Just don’t fade into the woodwork. Remember, your presence is valued no matter how much of it you are able to give at any time. You are loved. And as I always say…

There Is Always Hope!

 

 

Furiously Happy – A Tribute

I’m doing a tribute today to an amazing woman named Jenny Lawson. You may have heard of her. She’s an incredible writer and the author of the books “Let’s Pretend This Never Happened”, “Furiously Happy” & “You Are Here”.

She writes about her own struggles with depression and man, can she write!!! Her sense of humour is incredibly warped and twisted (just the way I like it), she blogs as The Bloggess (thebloggess.com) and there are several Facebook fan groups as well, one of which I belong to. We are her Tribe. We get her. We understand what she goes through and experiences, and even if some of us don’t live with depression, most of us know someone who does. For me, it’s my husband.

I wrote this piece one day when I was feeling overwhelmingly happy that I had found this particular Tribe to call my own. Here goes:
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I live with several health issues that leave me in constant chronic pain: Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, Chronic Fatigue Syndrome, Forestier’s Disease, Trigeminal Neuralgia, Diabetes Type 2 (on insulin) and Bipolar Disorder. I had Total Hip Replacement on Feb. 7/17 (with my left hip needing to be done as well and possible knee surgery on my right knee later on) and am having a good recovery. I am still in pain, and always will be.

I used to think that my “furiously happy” would come when I no longer lived in pain. Its only been in the last year or so that I’ve come to realize that will never happen. I will NEVER be without pain…that’s just the nature of my body. And when I realized that there would always be the pain, I thought at first “then I will never truly be happy”. I have an amazing husband, whom I love beyond measure. I have 2 grown up kids that I still worry about and three grandsons that I never get to see because of distance. We keep in touch though with social media, and that’s a good thing, but it’s far from being furiously happy.

Because of my health, I had to give up a career that I adored…Admin Support at the Executive level as well as being a Certified Event Planner. I loved my job with every fibre of my being, but came to a point where I physically couldn’t manage it any longer, and with my chronic fatigue, would never be able to manage again. Everything in my life seemed to be about loss…losing a job, losing my hobbies, losing professional relationships, losing friendships, losing mobility, losing at life.

Hubby and I decided in 2013 to make a move to Vancouver Island from Calgary after the weather in Calgary became too much for my body to handle…too cold, too much snow, too long of winters, too icy…too, too, too. We moved here without a job for Ray or even knowing what our apartment looked like – we rented it sight unseen. Slowly, we started making Victoria our home – walking by the ocean, going for coffee or dinner at various places. I soon realized how much I loved it here, even though there were really no friends to share it with (two couples and one girlfriend and that was all that I knew – and even then we rarely saw each other).

One day, I found the Jenny Lawson book Furiously Happy. I have never laughed so hard in my life. I gave the book to Hubby to read and HE has never laughed so much…and he’s not one to show much emotion ever, good or bad. But he laughed and often. From there, I found her website and her other book and then all of sudden, there was THIS group. People like me. People who were struggling and depressed and suffering mentally and physically and I thought to myself “God, thank you for bringing me home”.

Because I realized quickly that I seemed to be good at encouraging other people in their struggles, so I didn’t have to think about mine. I could offer advice or words of comfort, or just the right kitten picture and something would change for the good in that other life. And MY life felt better because of it.
And then I knew, the way that I became Furiously Happy was by being myself and sharing my life with those of you here who needed what I had to offer…a shoulder to cry on, a hug, some understanding, appreciation…whatever you want to call it. I became Furiously Happy because OF Furiously Happy. And now I have my Hubby and my family and my friends and my volunteering AND MY TRIBE!!
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Now, the reason I’m giving a shout out to Jenny today is that she has been undergoing a new treatment for her depression called Transcranial magnetic stimulation (TMS).  It’s described like this: (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven’t been effective.
Jenny started treatment 2 weeks ago…and people…IT’S WORKING!!!!!

I want you to go to her blog and read all about it. If you know anyone who is experiencing major depression in their lives and no other treatment has worked, then this MIGHT be an answer for them too. I admire this woman so much, and I’m so delighted that this is working for her, I simply had to share. Please go check it out, buy her books (you will laugh, trust me) and find your tribe if you haven’t already.

If you live with Chronic Pain, Chronic Fatigue, Fibromyalgia, or Invisible Illness of any kind, you can’t go through it alone. You need to find a support group. If you look me up on Facebook, I can introduce you to the Fibro group I belong to. We support everyone who is in pain. And if you’re a fan of Jenny Lawson and want to join the group on Facebook I belong to, use the contact page on the blog here, and let me know.

And remember…

there is always hope

Fibromyalgia and Online Support Groups

Welcome Back!

I belong to an online Fibromyalgia Support Group. I spend so much time on the computer that it made sense to me to find a support group online as well. It’s run by a lady named Catherine and has members from around the world – Australia, England, Canada, and the USA.

It’s a super supportive atmosphere and the one thing we are very clear about is that none of us are doctors and we are not there to dispense medical advice. We can talk about what does and doesn’t work for us, and our own medical experiences, but we can’t diagnose you based on YOUR symptoms, as Fibromyalgia can have SO many symptoms, it would be impossible to try.
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One of the so-called “tests” used to determine if you have Fibro or not is the 18 Tender Points as shown here:

FibroSymptoms2So you can see why Support Groups are so necessary when you live with Fibro, or really any disease that causes Chronic Pain, such as Osteoarthritis, Rheumatoid Arthritis, Lupus, Ehlers Danlos Syndrome, MS and more.
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Well, I joined a new Fibro support group a few days ago, and just had the most interesting experience. Yesterday, the Leader of the group “diagnosed” a member with a symptom she was experiencing (bloating and constipation) and told her she had “Leaky Gut”. I suggested that she shouldn’t diagnose, and what if it was something else, such as Gastroparesis?

My goodness, did I ever get a pissy response!!!! I took screenshots (which I won’t post here), but I ended up just leaving the group. I was told that this woman has 25 years of living with Fibro, she’s done years of research with top doctors, and she knows what she’s talking about. Apparently, this woman is determined that the only way to resolve Fibro is with Bovine Colostrum and a Chiropractor. Now, I’m willing to try the Bovine Colostrum to see if it helps, but you DON’T diagnose someone definitively, EVER. It’s even in her rules, which I quoted to her, which made her even angrier!!

And not only that, how dare I suggest Gastroparesis and the radioactive tracer test that would diagnose that because that would make this lady’s “Leaky Gut” even worse. FACEPALM (yes, she really put the Face Palm Emoji in there).

And not only THAT, how dare I tell her what to do in her OWN GROUP. She’s never been angry before, I’m the first one in the whole ten months to upset her, blah blah blah blah blah blah (yes, I am that talented!!)

So, I told her I was leaving the group because I obviously couldn’t state my opinion without being attacked, she couldn’t follow her own rules, and I don’t need that kind of energy in my life. I reiterated that it’s okay to suggest possibilities, yes, but you never tell a person that what you suspect they have IS what they have. That’s just being irresponsible. Then I called her an @ss and left. Oops!!

There is always hope.