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Living With Fibromyalgia - Online Support Group

Diagnosing Fibromyalgia Syndrome (FMS):

#1


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. Ruling out other conditions is a very important part of thi assessment as there are many other conditions with similar symptoms to FMS. These include, Multiple Sclerosis (MS), Lupus, Lyme Disease, and Inflammatory arthritis conditions. The testing is extensive, but that is a good thing. The doc definitely wants to be certain of your diagnosis.

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. (Check out our "There's an App for That" section for handy tools to help you track these symptoms. The link will be coming soon!)


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.

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#2

My PCP and rheumatalogist did not of these things, I just said I had muscle and joint pain and the PCP put my on Lyrica and the rheumy increased my Lyrica and after a MRI showed inflamed tendons in my buttocks, he added 2 aleve a day. I went to another rheumy and he gave me 3 shots, said I didn't have fibro and told me to stop taking Lyrica and my arthritis meds. I live in a small town and can't afford to take off work to go to the city to hopefully see a good rheumy until next year. I am still hurting and don't know what else to do. I did PT but I'm out of visits until next year as well.

#3

I was suffering daily migraines (complex or complicated migraines, I was told by ER doctors). So my PCP referred me to a neurologist that I had seen in the past for migraine control. My neuro ordered a brain MRI. Radiologist mentioned the possibility of MS and my neuro took me through every possible test with the last test being the LP. He referred me out to an MS specialist for consult. The consensus was that I did not have MS. My PCP had already suspected FM.

Once MS was ruled out, my PCP ordered 2 more panels for Lupus and RA that were more detailed than what the neuro had ordered. He also blindly prescribed a low dose of Cymbalta. The Cymbalta helped with the migraines and helped for a few days with the muscle pain.

On follow-up, he explained that I had a severe case of FM that was way out of control, but said we could get it under control. On the bright side, it was not RA or Lupus...LOL He increased the dose of Cymbalta. I have not had a migraine and I am ready to ask my neuro to taper off the Topamax. I still hurt and I still have all the other symptoms, but I feel we are on the right track and need to be off the Topamax so my PCP can better treat my FM.

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#4

It’s so wonderful and refreshing to see that you are getting such complete care! I wish you luck and hope you get to your goal soon. :slight_smile:

#5

It may be that you need a second opinion. You have the right to see another provider it you don’t feel like you are getting the care you need from your current team. I’m sorry that you’re having to deal with all of this; it has got to be really frustrating for you.



cjoney7 said:

My PCP and rheumatalogist did not of these things, I just said I had muscle and joint pain and the PCP put my on Lyrica and the rheumy increased my Lyrica and after a MRI showed inflamed tendons in my buttocks, he added 2 aleve a day. I went to another rheumy and he gave me 3 shots, said I didn’t have fibro and told me to stop taking Lyrica and my arthritis meds. I live in a small town and can’t afford to take off work to go to the city to hopefully see a good rheumy until next year. I am still hurting and don’t know what else to do. I did PT but I’m out of visits until next year as well.

#6

Don’t give up. I’ve tried more medications than I can count. You need to find a good doctor that will work with you even if it means traveling. You can do this. Don’t let this disease conquer you.



cjoney7 said:

My PCP and rheumatalogist did not of these things, I just said I had muscle and joint pain and the PCP put my on Lyrica and the rheumy increased my Lyrica and after a MRI showed inflamed tendons in my buttocks, he added 2 aleve a day. I went to another rheumy and he gave me 3 shots, said I didn’t have fibro and told me to stop taking Lyrica and my arthritis meds. I live in a small town and can’t afford to take off work to go to the city to hopefully see a good rheumy until next year. I am still hurting and don’t know what else to do. I did PT but I’m out of visits until next year as well.

#7

I called to large hospitals in the Philadelphia area yesterday and neither of them deal with fibro unless it is caused by neurological symptoms, unbelievable! I have 3 more places to call today, 1 is pain management and I think they handle fibro.

1 Like
#8



leslie said:

hi am new to this site. was wondering if anyone has fibro symptoms concentrated in their legs and when walking any distance to pain is unbearable? i often wonder if i could have something along with fibro but had an emg have no neuopathy in them. i don't have ms. mine has progressively gotten worse over the last two years and am almost unable to walk at all again due to the pain.

also, if anyone lives in the denver metro area and has a good doctor for fibro please let me know as i know of none.

#9



cjoney7 said: Hi and welcome Leslie, I am have fibro pain in my right hip/upper leg area. I am out of work 2 weeks because the pain was so bad. My MRI showed no problem with the joint but I have 3 inflamed tendons in my buttocks but I don't have much pain there. I live in a rural area and don't feel I was properly diagnosed so I am going to see a Dr. in the nearest big city but can't get in until 12/8. I take 300 mgs of lyrica a day but I really don't think it helps.

I find being at home and off my feet helps some but other times I feel like I need a cane to get around and I am only 55. Good Luck!



leslie said:

hi am new to this site. was wondering if anyone has fibro symptoms concentrated in their legs and when walking any distance to pain is unbearable? i often wonder if i could have something along with fibro but had an emg have no neuopathy in them. i don't have ms. mine has progressively gotten worse over the last two years and am almost unable to walk at all again due to the pain.

also, if anyone lives in the denver metro area and has a good doctor for fibro please let me know as i know of none.

#10

Leslie I have pain all over my body, but my lower back and legs become more and more painful during standing and walking. They become weaker the more I use them. Severe muscle fatigue is a big problem.

#11

Leslie i have the same problem, i do use a cane and a wheel chair .i had two normal emg tests and it turns out i just have a large case of fibro weakness.

#12

Hello, I have had a lot of weakness as well. One thing that has really helped with this is physical therapy. I have a PT who is knowledgeable about Fibro. We have been working on building up core muscle stability and strength. We go at my pace and it has been surprising to me how a few relatively easy exercises have helped. I don't even do them everyday (even though I try) and I still have seen improvement in my overall muscle strength. I have been so glad I started PT.

#13

I find that use of any large muscle group creates an exhaustion in the muscles and then the pain and aches set in, most notably in my legs. Even standing around for a while, like when I am preparing dinner, or waiting in line at a till, my legs start to ache and feel incredible heavy. My knees feel like they are in a locked position and it is very painful to move them. Once I get to this state with my legs and rest them for a while, they tire out even quicker if I do more standing or walking. It appears as though my recovery rate and stamina just fade way. I wont fully recover until I have had a long rest of at least a few hours to a full night of rest. Hugs.

leslie said:

hi am new to this site. was wondering if anyone has fibro symptoms concentrated in their legs and when walking any distance to pain is unbearable? i often wonder if i could have something along with fibro but had an emg have no neuopathy in them. i don't have ms. mine has progressively gotten worse over the last two years and am almost unable to walk at all again due to the pain.

also, if anyone lives in the denver metro area and has a good doctor for fibro please let me know as i know of none.

#14

Hi Leslie,

I use meds, Gabapentin, and recently started 200mg slow release tramadol which seems to be working quite well on the overall body pain I have. I still suffer from joint pain, as I have osteoarthritis too. I take celebrex that helps both my arthritis and fibro. I use stretching to help alleviate that tight muscle feeling. I also use a CPAP machine as I have a sleeping disorder and that has helped me to get more sleep. I do take an occasional sleep aid as I do not do well when I don't have a good sleep.

I haven't found anything that has helped the leg fatigue, which is both frustrating and limiting. But until I read your post today I hadn't really thought of researching what I could do to maybe improve this. Thanks you have motivated me.

I understand how you feel about the eating when in pain, I think many of us do that, including me. And if you are tired we tend to crave carbs ....our body's way of getting us quick use energy. We have a fairly active Weight loss group under the groups tab above if you are looking for support and ideas.

We just reached 4000 members over this past weekend, pretty awesome. If you have a general question you want to post for for all members, post it under the general section of the discussions unless it might fall under one of the specific discussion areas, then post it there. One thing with Fibro no matter how long you have had it, I think there is always something new to learn about it and most members are so happy to help and answer questions, so please post your questions. Hugs!!

#15

Hi Leslie, I am doing really basic exercises. We started working on my legs, just working on increasing range of motion in the hips. This consisted of exercises I could do laying on my bed. We also worked on (and continue to work on) increasing abdominal muscle tone / strength. The next thing we worked on was increasing shoulder range of motion. I have a lot of wrist and hand pain and this is supposed to help (I think it is starting to help). I am only going into the PT one time a month now and each time I get 4 or 5 exercises to do at home. My physical therapist has said if it hurts to just stop or reduce the number I am doing. I have gotten a little bit sore doing some of them but nothing terrible. I think the biggest thing is to find a PT who is knowledgeable about Fibro and whom you can trust.

leslie said:

thanks for your suggestion. do you have a lot of high pain when doing the pt? that is my issue besides the fatique i can't control the high level of pain. i imagine you do the pelvic tilt. i was able to go to some pt two years ago before my legs got to this extent of pain and now muscle fatique. leslie in denver

#16

Hi Leslie, I haven't done official pool therapy in many years. However, I do have access to a heated pool during the summer and I do go in and do some gentle stretching in the pool at least 2 times a week most weeks in the summer. Aqua therapy can be really beneficial, if you search in the discussions box for "warm water therapy" or "aqua therapy" you should bring up others' experiences. I wish I had easy access to warm water pool in the winter, however the closest one with affordable classes is 40 miles away.

leslie said:

thanks again for your ideas. i think my insurance required i go two times a week minuium at the time so if i can get my doctor to write it out for one time a week i might be able to do it. have you done pool therapy?


#17

I am a 61 year old female and I have Asthma, Fibromyiga, hip problems, Tennis Elbow, Osteo arthris in left shoulder, left side of my neck and in my thumb. On my right side I hace Carpel Tunnel Syndrome, and swollen feet.
I am now feeling so low and that I feel very much on my own as I also hace a disabled husband.
I applied for PIP and they turned me down, so I am appealing their decission.
I used to be able to go to the gym and have a really good workout, go swimming twice a week. Now I feel that my life no longer has a quality of life. I dont know which way to turn. I have a good doctor, but I always have to wait to see her, so what can I do to help myself.
HELP

#18

I’m sorry to hear you have all that pain and depression Val. FM is a very devastating condition for some, for most I should say. And it’s different for each person. A lot of people can get it under control with diet and exercise but it’s such a battle for those who have several other conditions along with it. And the thing is, some don’t understand, for instance, my friend runs a gym. (Years ago She weighed over 200 lbs. and I was going to the gym everyday and was in really good shape, she decided to start going with me and now she’s in really good shape and owns a fitness studio.) am I jealous? Nooo! Lol. Well, maybe a little. So now she is always telling me I should come to the gym and work out. She says there are other women there that have FM and it helps them. I do realize that, and it’s true, when I eat right and exercise I feel better, but It’s getting myself there and being consistent. And I have a pretty severe case, I often wonder how women can work, because there is no way I could. I’m on disability. I was diagnosed when I was seeing a specialist about my spine. I have spinal stenosis all up and down my spine, ddd, and arthritis. Now I have all sorts of feet problems, carpal tunnel and everything else. It really sucks! Plus I just lost my son in 2013. So the depression on top of that is awful. My older son lives in Hawaii, so my husband and I got to go there for the last two Christmas’s. That helped. I could go on and on. I suppose since this is my first post, I’m just getting started. I really need all your support.

Good luck to you Val.

#19

Hello Leslie,

I also have legs issues and scares the hell out of me. I am not overweight for my height and have had three different vein striplings of both legs. I get various veins that have caused pain these past several years. The pain I have now is in the hip and down to my toes. My rhemo. Said on top of FM I have bercitis. If I don’t stay moving it gets must worse. I did do some water therapy that strengthened my core, but insurance only takes care of 16 visits. On my bad days I soak in Epson Salt hot bath. If I drive say 30 minutes and try to get out and walk is it terrible. I have had people offer to help me and get imbaressed.
I have been Blessed that my Rheumotologist is the best and in fact she let me try several meds until we found the best mixture. She is a fairly new graduate and is up on all the latest FM meds. At one point I asked about Lurkea ( spelling?) and she suggest I hold off, she said side effects are much more serious than the meds I am currently taking.

Best of luck to you!
Ron In Michigan.

#20

Leslie, if you still read here, and are still looking for a good doctor send me a message. I would recommend my doctor but he isn't taking new patients any more. I can give you a list that he gave me for another friend though. The pain clinic at the New St Anthony's is good for pain control and might give you some recommendations.