Living With Fibromyalgia - Online Support Group

Newbies Guide to FMS


Below, are two of the articles for the FMS guide for every one to take a peek at. There are a total of four documents so far. The titles are:

"Diagnosing Fibromyalgia Syndrome"

"Preparing for Your First Appointment"

"A Warning for Our Members" (this is about spam and sales)

"FMS Action Plan" (Check-list for fibro flares. Mbrs can use this to determine how to treat a flare without going to the ER. Each mbr will have to modify it to fit individual needs)

I'm just posting the first two for now. It's a lot of information to review. Take a look and leave feedback below. Please use this discussion for replies, and try to keep suggestions concise. Too many ideas flowing and some things get overlooked!

Diagnosing Fibromyalgia Syndrome (FMS):
So you have pain all over, trouble sleeping, brain fog or just feel out of it. Maybe you already have a condition that causes chronic pain, like rheumatoid arthritis, lupus, or had a physical trauma. Now, you have this pain that won’t go away and seems to get worse when you are stressed, over-do it, or even when it rains! It could be time to see your primary care physician for an examination.

A Little History…
The 1990 Criteria: In the recent past, the main provider to diagnose fibromyalgia was the rheumatologist. They would conduct an examination of tender points all over the patient’s body. If the patient scored greater than 11 out of 18, a diagnosis of fibromyalgia syndrome could be given. This was the standard of diagnosis until 2010, when a new study determined a better method for diagnosis. There are still some providers who us the Tender Points Test to diagnose patients, but this test is no longer the most current.
There were problems found with this way of diagnosing FMS. Many practitioners did not know how to correctly conduct the Tender Points Test (TPT), and patients had to be referred to specialists for diagnosis and treatment. Also, there is now more information about FMS and the 1990 Criteria does not include key features of FMS like, fatigue, unrestful sleep, disrupted sleep, and cognitive symptoms. This assessment simply fails to address the varied symptoms of Fibromyalgia patients.
Fast-forward to 2010, when a new study resulted in a better way of diagnosing patients with FMS. The new method doesn’t replace the older TPT, but helps address areas that were lacking in the TPT. These include such as fatigue, cognitive symptoms, unrefreshing sleep, physical symptoms like headaches, numbness & tingling, nausea, etc. as well as fluctuations in pain levels. These additions help doctors make more accurate diagnoses of FMS. It also allows more types of doctors to diagnose FMS and is no longer limited to rheumatologists. Now, neurologists and even primary care providers are successfully diagnosing and treating FMS, meaning greater access to care and treatment for those who suffer from its symptoms.
So, How Will My Doctor Diagnose Me?
While there are no specific tests to confirm or negate a diagnosis of fibromyalgia syndrome, your doctor may begin by running many different labs and diagnostics in order to rule out other conditions which could cause very similar symptoms. You may have any number of the following screenings performed:
• Blood tests
o Your doctor could be screening for genetic markers, infection, inflammation, or specific sets of indicators of other conditions.
• Radiology (x-rays)
o These are done to rule out any musculoskeletal problems that may be contributing to your pain, such as osteoarthritis, spondylitis, inflammatory arthritis, etc.
• MRI (Magnetic Resonance Imaging)
o This gives a better picture of the structures (bones), soft tissues(muscles) and connective tissues (tendons)
• EMG (Electromyogram)
o These measure the electrical activity of muscles, and are used to diagnose a number of disorders affecting the nerves and muscles.
• There may be other studies that are not mentioned here that your provider believes will help with making an accurate diagnosis.
Your provider will also perform a physical examination along with a thorough history. You may be asked questions about your family medical history, any autoimmune diseases, injuries, recent illnesses, trauma, or surgeries. The provider will also ask questions about your pain, fatigue, rest, cognitive symptoms and more. Be patient with all of these questions. Your doctor really will use this information in making a diagnosis. Try to be as accurate as you possibly can.
For the physical examination, your provider will check a number of things, including reflexes, your joints for redness, warmth, swelling and pain, and perform the TPT mentioned earlier in this article. When all of the necessary data is finally collected, your provider will be able to arrive at a diagnosis. It is at that time when you will be able to discuss different treatment plans for FMS with your doctor. Though there is no cure, with the right treatment plan and a good care team, many FMS patients are able to live full and rich lives.

Preparing for Your First Appointment

If you are ready for your first appointment with a specialist to discuss your pain symptoms, there are a few things that you can do to help you make the most of the time you have with the doctor. This guide has tips that you can employ to make sure that you are prepared, and come away from your appointment feeling empowered and that time was well-spent.

Write out your pain history

  • If you started to have pain in your knees when you were a 10 year-old, that is something your doctor will want to know. Think back as far as you can and attempt to write out, in order, all of those random aches and pains that you’ve had over the years.
  • In this history, be sure to include any possible pain triggers. For example, you started having deep leg pain after a case of chicken-pox when you were young or pain began after the birth of a child.

Write your past medical history

  • Include all of your medications, supplements, herbals, topics, topicals, and over the counter drugs, doses, time of day that you take them, why you take it, and what time of day you take it. There are forms available online that you can print out and there are numerous free apps for med lists. If you aren’t a techie, that’s okay. Simply write your list out.
  • Your family medical history can also help your doctor, so be sure to add it. Write down everything, even if you’re not exactly sure what type of arthritis or heart problems a family member may have had. It could be important.
  • Your personal medical history is key as well. Include any diagnosed conditions, surgeries, recent visits to the ER or hospital stays. You’ll want to make sure that the new doctor knows who your care team is too, so include your doctors’ names and phone numbers. There are apps that will include your complete medical history and medications list. Take a look and see if there is one that is right for you.

Keep a Symptom/ Pain Diary

  • As soon as you learn that you will be heading to a specialist, take the time to make a symptom/ pain diary. This is one of the most important tools that you can give your doctor. You’ll want to include the following:
    • Rate your sleep each night on a 0-10 scale. 0 = good, quality sleep; 10 = Insomnia throughout the night.
    • Rate your ability to fall asleep on a 0-10 scale. 0 = no problems; 10 = unable to fall asleep.
    • Rate your pain on a 0-10 scale. 0 = no pain; 10 = the worst pain imaginable. There are also pain charts available online to print or as apps. With these, there are diagrams and you can select the body parts that are most affected by pain. These are great tools and provide valuable information to docs.
    • Rate your “brain fog”. 0 = alert all day; 10 = unable to focus or think clearly all day.
      • NOTE: Please look for our handy “Symptom Log” You can print it out and just check the boxes for each above item!

Make sure that your medical records are sent to the new provider. They will be interested in recent lab values and radiology reports too.

Think about what you would most like to ask the new doctor, and write down a few questions. You will usually have an hour for your first appointment. A lot of that time will be spent reviewing your medical history, discussing why you’re there today, and with examination. In order to get the best answers possible, try to keep your questions brief and direct. Writing them out ahead of time helps you keep to the script. Be sure to write down any notes so that they will help you remember the answers later.

Check out the website, and fill out any paperwork ahead of time. You can do the forms at your own pace and make sure that you’ve got everything just right. It will also save you time prior to the appointment, and maybe you won’t need to arrive as early.

Bring a friend. If you are anxious, worried, or it would simply make you more comfortable, bring a friend. It will make your visit more pleasant, and they can help you remember to ask your questions and recall the answers later.

Of course, you also want to be sure that you arrive on time. For first appointments, it’s advisable to be at least 15 minutes early. In fact, some offices require it. Plan ahead for traffic, and any barriers you might encounter along the way.

A little preparation goes a long way. You’ve probably waited some time to get in to see this specialist, so make the most of the time you have. These tips should help you do just that. Be positive. Be assertive. Be prepared!


Wow, thanks for posting I will review later today.

I do have a question - I was under the impression from your posts this weekend that you were working on the outline to send to all of us to review and then follow up with a conference call so we could discuss and assign tasks. Is that a misunderstanding on my end? Can you clarify please? Thanks.


Yes. It’s on notebook paper though. I had planned to just send a photo of it so that I didn’t have to type it up, but I may try to do that tomorrow evening. Let’s get together on Saturday morning. I’m usually alive and kicking by 10am est. I have to do some touch up painting on Saturday, so the earlier the better for me. Let’s keep the first call to 1 hour. I can set an agenda too. I’m looking forward to hearing everyone’s talents!

There is a list of topics to divide, and we need to discuss formatting. That may be an issue (formatting), but it has to be done in other for things to work well.


Can we get a copy of the agenda or outline ahead of time to help keep us to the one hour time limit? I need to be somewhere on Sat. around 10am pacific time. So I could do a call at 8am pacific/11am est if that works for everyone else? thanks.


Yes. I will post it here, and have asked for everyone to list their time preferences. The agenda and topics will be typed tomorrow evening. I have work to do tonight.


Any time is fine with me just let me no.


I know when I first started feeling sick and it was suspected I had fibro, I had to go to several different websites to get what is written above. I think is very helpful, as it aids in giving some control to the patient when dealing with this disease, by encouraging an active partcipation in their health and medical care. I like it. Good job Claire.


Hi, Everyone.

I may be able to talk this Saturday, I will confirm with you tomorrow. Thanks, all, for your work.



D’awwww, shucks! :stuck_out_tongue:
Thanks! That’s a huge compliment, and is much appreciated.


Just in case I was supposed to post about the phone call here, I am available Saturday morning. Have we confirmed for sure the time? I am not sure if everyone is available yet. Thanks for setting this up and I am looking forward to live communication!!!!


I think the time is 8am pacific, 9 central, 10 eastern. I’ll need everyone’s numbers, are they under the phone listing discussion? Or, I can be the conference line set back up.


Thanks, Claire. I am definitely available Saturday at 10 EST. I think setting the conference call line up would be great. I’m excited!


We should take minutes for the call. Who is good at note taking?


I will be honest, I suck at minutes and with my arthritic hands I would appreciate someone else to do them. Sorry to be a wuss.LOL.


I cant hold my phone and take minutes at same time. I must be a wuss, too. Lol.


If it is 10am eastern, then that is 7am pacific. I just want to confirm. . . I can do that, unfortunately I am not a sleeper. Just let me know. thanks. I can take notes if we need to but at that early time in the am I can't verify what you will get. . .


Michelle, Would you like us to try to reschedule for a little later? It is ok with me, if it’s ok with everyone else? That is early!:frowning: Garfield wouldn’t approve.


It is ok, I can do 7am or 8am. I need to leave by 9:30am with my daughter for something and she needs prompting to get up and ready so I don't really want to start the call any later than 8am. . . It really is ok either way, I am usually up at 5:30am 7 days a week . . . chronic sleep problems. . . oh well, I get to appreciate a lot of beautiful sunrises :-)


I am grateful to have found another wuss! LOL!! If you want to move the call to a later time that morning, I am totally fine with it. Just let me know. Thanks Michelle for not being a wuss and offering to take minutes. You rock girl. Hugs ladies.


Mic, I love your sense of humor! Lol. And yes thank you, Michelle. :slight_smile: