Diagnosis

[kathyrooker]

Hi everyone,
Could everyone list their symptoms and how they were diagnosed? What tests did you have? I have been having wierd symptoms most of my life and my physician insists it is fibromyalgia.
KathyR

[snapdragon]

Fibromyalga,is usualy dxed by the presence of specific tender points ,there are nine sets of tender points and a rheumatoligest is the best DR to see for your Fibromyalga symptoms as their are many other conditions that overlap and or mimic fibro ,so see the right DR. good luck , Snap:)

[Linda25]

First I was dx with chronic fatigue because i was so tired ALL THE TIME and couldn't get enough sleep, had disturbed sleep, insomnia - I would drag myself around like a zombie at work

then I started having a bunch of diffuse pain through-out my body, I'd always had neck and back pain, but now I was having pain in my whole torso and limbs - even pain in the sternum

I got multiple blood tests for anemia, thyroid function, ect. everything was good

Finally they sent me to a Rheumatologist who dx me right away by my symptoms, history and the tender points

Since that time I've had a CT scan of my chest, several MRI's of my head and a lot of muscle testing and neurological exams and breathing functions tests (I also have migraines and asthma) and all tests were negative for anything else

Your local arthritis foundation can refer you to a doctor who works with people who have fibromyalgia - there is STILL prejudice that this is not a "real" disease

good luck

Linda25

[kathyrooker]

Thanks Linda,
Did you have an EMG, RNS, or SFEMG? Have you ever been tested for any autoimmune diseases like myasthenia gravis or lupus or anything like that? Does medication control your symptoms? What do you take?
I have been treated for fibromyalgia for 9 years. The medications the doctor gave me did nothing for me so I wouldn't take them. This year I developed breathing problems and now I have off and on muscle weakness and soreness. No pain reliever helps. My eyes go haywire and my face gets numb. I only work a couple hours now because I don't have the strength to keep going for the 8-10 hour days I used to do. Every doctor I see just thinks I'm suffering from some psychiatric condition. I'm really getting mad!
Thanks for listening to me rant and I would love any help from anyone.
KathyR

[snapdragon]

Thanks Linda,
Did you have an EMG, RNS, or SFEMG? Have you ever been tested for any autoimmune diseases like myasthenia gravis or lupus or anything like that? Does medication control your symptoms? What do you take?
I have been treated for fibromyalgia for 9 years. The medications the doctor gave me did nothing for me so I wouldn't take them. This year I developed breathing problems and now I have off and on muscle weakness and soreness. No pain reliever helps. My eyes go haywire and my face gets numb. I only work a couple hours now because I don't have the strength to keep going for the 8-10 hour days I used to do. Every doctor I see just thinks I'm suffering from some psychiatric condition. I'm really getting mad!
Thanks for listening to me rant and I would love any help from anyone.
KathyR
Kathy the symptoms you discribe are the same as I had ,and it only got worse . I had fibromylgia,hypo thyroid, then IBS ,Then CFS ,I at that point was too sick and tired to do much of anything,and the DR. I am sure thought it was all in my head ,I ended up in hospital several times with chest pains and trouble breathing. my neck started swelling ,had allergy tests ,my heart rate started droping to 41 beats and caused me to be addmitted to hospital ,and lucky for me ,the nurse reconized my symptoms ,as she had been very ill with MCS (multiable chemical senesitivety) .I was sent to a Enviormental health center ,and that was where I was dxed with MCS,it was a reliefe to know what was wrong ,it causes a lot of problems but with the proper managment it can be controled by most ,once you find out what chemicals are causing you to react . Ask your Dr. to send you to a Ev clinic . Read up on MCS and see if you reconize the symptoms . Hope this helps . Snap

[Fayelle]

Since I was a kid I have had chronic pain, fatigue, IBS, depression, tinnnitus....

I learned to live with it, doctors said growing pains and finally hypochondria...

I have also had hallucinations, sometimes due to sleep issues other times not....

As a teen I just dealt with it and told no one about any of it....

I started having kids and felt better during pregnancy....But I would take a serious downswing when I had my babies.....I was always sick, never seemed able to get enough rest no matter how much or little I slept.....I went through the mental health system and got worse....

At about 25 or so I developed constant upper back pains and stiffness.....About 27 I was constantly congested and coughing, developed asthma and allergies.....And then my neck started freezing up and the vertigo set in....Brain fog was a constant by this time.....

At 31 I hit the wall, couldn't get out of bed, had dizziness, periods where I could not speak....Extreme cold,extreme fatigue. To the point where I could fall asleep anywhere....My coordination was shot, my pain was worse than it had ever been....Extreme depression and anxiety.....Finally I was diagnosed with hypothyroidism and diabetes....And then fibro on top of that.....

I guess once you get to the point where you have so many symptoms that nothing or everything makes sense either you are dying or have something that sends incorrect signals to the brain somehow......

Things at least returned to my previous normal upon treatment of the thyroid and diabetes....Now I just treat the symptoms and carefully at that because of my family history of addiction.....Then come to find out fibro runs through my fathers family line......

I am missing a whole lot of symptoms especially a lot of the neuro symptoms, but these were the most memorable....

I believe also that there are 18 tender points, 2 sets of 9, and there is a certain amount set by the rheumy association to indicate a positive DX of fibro.....I have not had that test, and I have not felt a need to have it with my past making the DX pretty obvious....Plus with all the rule out tests it is kind of pointless to put myself through another since I am being treated for it anyway....

At any rate that is my timeline more or less....

Fay

[Linda25]

Hi Kathy

I have had a number of EMS tests and I think they did show positive for fibro - but very weakly- I don't think I even understand what that means - sorry

I'm sorry but I am unfamiliar with the other abbreviations you gave, if you spell it out I might know it

I have been tested for Lupus and Rheumatoid Arthritis - both negative, though I do have the "wear and tear" type arthritis in my spine, hands and knees

I have stress and allergy induced asthma which can be a real problem at times and can make eveything else even worse

I've got a BUNCH of very reactive allergies to pollens, grasses and molds. If I don't treat the allergies with preventatives, all of my health symptoms get worse and I also end up with serial sinus infections.

I was given the CT scan because my asthma doctor thought I had sarcoidosis, but that was negative (thank my higher power)

Echocardiagrams and stress tests of the heart all normal. CT of the gallbladder revealed a "sludgy" gallbladder, but no stones.

I have had many neuro exams because I get bad migraines and extensive eye exams and specialized tests because glaucoma runs in my family - but those are all OK

I have seen Homeopathists, Chinese medicine doctors, Chinese Intuitive doctors, and acupuncturists and have been dx with "gallbladder meridian weakness" "Too much female element in my gallbladder meridian" and a congested liver - treatment for these conditions IS helpful, but beware of some Chinese medicine practitioners - nobody can CURE you, if they tell you they can, they are lying, run the other way, they can only relieve some symptoms. You should not have to pay more than $70 for follow up appointments.

I have chronic major depression and PTSD and have been diagnosed with Somatization disorder; meaning that I get physical symptoms from anxiety and depression. This is NOT the same thing as malingering or hypochondria. I don't mind my doctors thinking that I suffer from a psychiatric condition because I DO - but they have to take my physical conditions seriously, and thankfully they do and Social Security did (I have SSDI)

There is nothing to be ashamed of if you have depression/anxiety or phsical problems related to the two - it is very common and doesn't mean that "everything is in your head" there is a lot of general confusion about that which causes people much uneeded stress. Also, who WOULDN'T be depressed or anxious if they had this many problems and pain? it is a vicious cycle.

Keep pushing for as many diagnostic tests as you possibly can, that's what I did, also, when I applied for SSDI the government sent me to a BUNCH of tests and it was no cost to me - so if you honestly believe you are disabled you should go ahead and apply (it may help to get a lawyer) - I am NOT advocating that people apply just so they get free tests - that would be an abuse of the system.

It took me over a year of seeing my PCP almost every 2 weeks before he finally agreed to send me to the Rheumatologist, saying that "it wouldn't matter whether or not I had Fibro since there is no cure" Well it mattered to me!

Everyone is different as to whether there are any meds that can help. The BEST thing you can do is live as healthy a life style as humanly possible, including daily exercise (even 10 minutes of walking is good) Don't overdo it though or you will bring on a relapse - the balance of knowing how much to do is VERY difficult to discern.

Stop smoking (it reduces the level of Oxygen in your system and makes you more fatigued overall once the initial hit of nicotine has worn off)

Eat HEALTHY food and avoid processed flour and sugar and too much caffiene

Take moderate doses of vitamins and supplements (Calcium, Vit. D, B-6 and Magnesium Malate in addition to a GOOD multivit/mineral- doesn't have to be organic, but a major brand is best)

Sleep as much as you need to and take naps if you need to, don't let people make you feel guilty about this - BUT DON'T Stay in bed all the time, you have to get up and move around or you will GET WORSE.

Eliminate as much stress and negative people from your life as possible and try to find a spiritual program that you can turn to in times of struggle. Psychotherapy and support groups such as al anon can be invaluable as a source of healing our mental pain and learning HOW to destress - for many of us are Type A personalities and feel guilty about gearing down and dealing with chronic illness.

I'm a real blabber tonight!:p Hope you can find something useful in what I have said

good luck to you

love,
Linda25

[Tootsie]

Hi Kathy,
Linda has done such a good job of giving you advice that I can only say that I agree with everything she has recommended. The only thing I can add, is that fibromyalgia is frequently a secondary condition that develops when something else is the major problem. That can be trauma, an auto immune disease like rheumatoid arthritis or lupus, unrelieved stress and many other things. Once you treat that major problem the fibro may be relieved.

My fibro is secondary to a severe scoliosis that was treated with a spinal fusion when I was 12. Cheerio.

[GJZH]

I was just diagnosed with Fibro...but really think the two RA docs I saw wanted to get rid of me...I tested positive for RA, but they did not feel I had RA...so they poked and prodded and then said I had Fibro...I am not convinced that I do...I have had two spinal fusions...Cervical and Lumbar, but have problems throughout the spine.

I saw a new RA doc today and feel he is investigating the positive RA on the blood test as it should be. He sent me for blood work and they took nine vials of blood to test for many different things...including the sed rate which the other two docs did not test for...This doc seems so much more thorough then the other two docs. He took a very, very long time speaking to me about the various immune diseases and how they impact our health and work on destroying our joints etc.....I think he feels I might have Ankylosing spondylitis since my entire spine is diseased and discs are effected. I think it will only be a matter of time until the entire spine needs to be fused. One spinal surgeon I saw has already alluded to that at the last visit and showed me pictures of the spine of a patient who was fused from top to bottom...

My cervical spine was fused last August and is already showing signs of degeneration below and above the fusion...though there were signs before the fusion...The lumbar spine was fused L1 to S1 and the discs in the thoracic spine are all dessicated and some are bulging..

I think they should run a battery of tests and then do the trigger point tests before making a confirmation of Fibro...I was disappointed that the first two docs I saw did not do this...just said that because the positive number for RA was low they would not confirm for RA...but would not run further tests either..so find a doc that will take the time to run the tests and work with you...I think that is very important....not jump to conclusions, apply a label, and get rid of you.

[BrokenBladder]

In my case I started off having bladder problems. I kept getting one infection after another until finally I was sent to a urologist. It was at that time that I found out I had interstitial cystitis, which is bleeding ulcers in the inside of my bladder wall. I was also diagnosed with Mellody Sponge Kidney Disease. During this period I also had/have severe anxiety along with depression. Then I started having other chronic pain throughout my body. My urologist said that it was fibro, but he wanted to make sure so he sent me to a rhemy. Well needless to say I was diagnosed with fibro, IBS, and hypermobile joint syndrome. I also had a 1:80 titer on my bloodwork for lupus.
The hardest thing for me has been to accept my illness and not overdo myself. I'm still in this state of denial until I find myself in bed for 3 days feeling miserable, LOL.