I was told I have "a hypersensitivity pain disorder". I was also told that FM falls into this category but I do not have enough diagnosing criteria for FM (no tender points). The treatment is the same and the symptoms minus the tender points are the same.
Now I'm having a difficult time with this since I do not suffer with anxiety/depression, I do not have any GI problems (everything goes in and comes out just fine ), I do not have any neck or face pain and I sleep wonderfully. I actually just had an eeg done that showed I transition well into and out of sleep cycles; I even exhibited a lot of alpha waves which are the "life is good" waves in the brain.
I was exercising and eating well when my symptoms began (I had a bout of the flu and never recovered).
When I finally went to the doctor five months later he told me I needed to exercise more !! I tried to tell him that's what I WAS doing but he said that maybe I needed to exercise even MORE (I was jogging anywhere from 3-10 miles every day!!).
I sought out a second opinion and he said that since my bloods were fine and I didn't have hives or swollen joints I don't have anything autoimmune and agreed with the first doc.
My symptoms started about three years ago when I developed circular lesions on my chest and neck (about 10 of them) that went away after several hours. I gave birth a few days later and within a month I was experiencing bladder problems (blood in my urine, urgency, hesitancy, retention etc...) and also irritated eyes. I still have these symptoms they have only improved one time and then only for three weeks.
Then about a year ago as I said I had the worst case of the flu I had ever experienced and never recovered (I had continued joint/muscle pain, fever, no appetite and fatigue). Two months later I had a flare up that has caused wrist problems. Since that time until July I had a flare up every three weeks that lasted two weeks. With every flare up I added a new symptom. The flare ups got progressively worse but the remissions became easier (I typically had a great deal of residual pain and fatigue but even that disappeared between flares). When I became pregnant I didn't flare up for six wonderful weeks at which point I became bedridden for three days. It left me so weak I had to use a cane (I'm 28). My shoulders were affected that time as well and I had a great deal of residual pain. I had remission until I was 17 weeks along (our baby had died and I was induced for the delivery). I was warned the induction will cause a fever. When the fever hit I could hardly breathe because of the chest pain. My body and eyes ached terribly and it was excruciating to urinate. After I delivered the fever subsided and everything went away except the chest pain, my vocal chords were affected too so it left me froggy. It's been three weeks now and with the exception of the chest complaints I have been entirely symptom free for three weeks; absolutely no pain AT ALL (I haven't felt this good in a year actually about three years)! I have thoroughly enjoyed it but am again beginning to flare.
My joints began swelling even with minor activity a few months ago (during my pregnancy) and will swell periodically for no reason at all. They will not test me for lyme disease (I have no idea why). My symptoms become worse in the heat especially my vision (gets blurry) which led my neuro to suspect MS but he says it's improbable based on my MRI.
I really don't know what to think. Please tell me what you think!!
I was just curious about your sleep study. YOu stated you had lots of "alpha waves". I'm not sure when you had these alpha waves or who read or did your sleep study but fibromyalgia commonly exhibits something called "alpha intrusion" meaning your active brain waves interfere with your delta waves (deep sleep waves). I was just curious about your mentioning lots of alpha waves. I hope that you find the answers you deserve, you've really been through it!! Hang in there and if they won't test for what you would like them to test, ask them why and if you don't agree with their answer, find someone who will test you!! My best to you!
ASDGRMama, your doctor called your condition fibromyalgia? With swollen joints and swollen eyes and a rash that appeared at some point? Have you been to a rheumatologist? While fibromyalgia is NOT a diagnosis of exclusion, it should be the last thing you suspect when someone comes in with symptoms such as yours. You have to rule out more serious problems first. Sorry, but I think fibromyalgia is a bit of an overused, unvalidated diagnosis. What you are describing sounds more like something like lupus or another collagen/vascular disease (rheumatoid arthritis).
When is the joint pain/swelling worst in the day? Does the swelling/pain get worse or better with use?
Shawnee, I had the eeg done to determine if I was having seizures (I have a rare neurological condition that predisposes me to seizures but I've never had one that I know of). My neuro said that I transition into and achieve each stage of sleep very well so I have no problems with my sleep cycles.
butterfly, the two doctors I mentioned above were rheumatologists. The second one would not believe I had swollen joints unless he personally saw them (I have 5 children and at the time one on the way; his office is two hours round trip and he wants me to come to his office immediately to show him if I develop a swollen joint. I homeschool as well and am completely unable to do that!). I am very stiff in the morning and with any type of inactivity (church and long trips are rough). My hands will swell with activity but my knees, SI joints and shoulder seems to swell regardless if I'm active or not. The swelling has never lasted for more than a few days.
They did a full lupus panel on me with everything coming back negative (although I know from the lupus message boards that it can take years before some people will get positive bloodwork).
My first rheumy did say possibly early RA but he wouldn't commit to it and was rather certain that I didn't have it based on my negative RF.
I agree FM is WAY overdiagnosed which is an injustice to those who trully do have it.
My regular doctor agrees that they dxed me with that because they don't know WHAT I have.
kcgage, I wonder how many of us with neg. bloods would eventually have pos bloods if our doctors would just keep testing us rather than assuming it must be fibro because it's "not anything else".
With every flare up I have had a joint that was affected and now those particular joints and the muscles surrounding them are weak and they fatigue easily. When I flare those are the joints that start aching first; I woke up with my left SI joint swollen this morning and my knees bothering me.
I am not being treated due to having been pregnant and hoping to be again soon. They suggested the typical antidepressants but I refuse to be treated for a disease I do not believe I have. I am not in denial if I trully felt I had the criteria for FM I would accept that's what I have. It is a respectable dx and a disease that is to be taken seriously but I do not feel it can be applied to my symptoms! I will also not "just try it and see if it helps" because to take a potentially toxic chemical with no firm reason to do so does not appeal to me.
I'm not even sure who to call when I'm flaring so now I don't call anyone. I have to admit my first rheumy is easier to work with and he'll do various tests if I ask and have a good reason but some things he's stubborn about (like the lyme disease test or monthly testing for ana and RF).
Well, thanks for replying it helps just to get it all down and have people who understand respond .
Wanted to add that the first rheumy only saw me once and didn't do any of his own blood work even though it had been two months since I had had any done. He has since done a cpk test per my request without seeing me (of course it was normal ).
The second rheumy saw me twice (the second time was for about 4 minutes to tell me my test results were normal).
Can anyone even make a reasonable GUESS after seeing a patient only once or twice??????
I don't know where you live but from what I understand most people only the rheumy once or twice. I saw mine for the 1st time on Monday. My doc had forwarded all my info and test results [all normal] to him. He was very thorough and went over my entire health history with me. He is to be sending a report to my own doctor with his recommendations. I agree that these doctors don't know us and our family doctors usually aren't "equipped" enough to deal with something like FM, but at the same time, I would rather deal with my family doc, who knows me, and I can get in to see him on a few days' notice (if that) than a rheumy who takes months to get into. I trust my family doctor to follow the rheumy's recommendations.
I'm also very stiff in the morning. I find a warm shower and some moving about helps. I get acupuncture for things like my back, neck, and SI joints [it's supposed to be great for knees too]. It really, really helps.
I agree that FM is probably over-diagnosed when no one has any further answers. The first time I heard the term and ran home to check the internet as to what it was, my jaw was literally hanging open. Everything that was written about FM was totally me. If you really, truly, don't believe that you have this, keep pushing. Get second, third, FOURTH opinions if you have to. If you keep getting the same responses, maybe they are correct with their diagnosis. FM affects people in many different ways, it is an individualized condition.
Have you tried any herbal remedies if you can't take prescriptions? The reason they use anti-depressants is to increase your seratonin levels and to help with sleep. There is a very strong connection with FM and sleep disorders.
Anyways, enough babbling for one day. I wish you all the best, please keep me posted on how you make out. NEVER hesitate to vent or ask 1,000 questions [God knows I do!].
I just wanted to say after reading your posts that we are so much alike. I too have been diagnosed w/ Fibromyalgia and also Central Pain Syndrome but those dx's left me w/ a lot of unanswered questions. I believe I have SLE which is not yet showing specific bloodwork but I just have to wait and see like you. I applaud you for being such a strong advocate for yourself and being the boss of your own treatment!! I just wanted to say that I definetely share your frustrations and your pain and fatigue too. I too think they give this diagnosis often when they just don't know what you have... yet. Hang in there kiddo! Hope you're doing okay or as well as you can right now!
Love and best wishes,
Hello kcgage! I use herbal/nutritional therapies and have found it reduces fatigue and increases my energy levels but it doesn't prevent the flare ups or reduce the residual effects (for me that means what I deal with between flare ups).
As for the sleep disorders that's the odd thing I have no trouble whatsoever with sleeping. I honestly have none of the distinguishing features of FM. The only symptoms of FM that I have are symptoms that are also common in a great deal of other conditions.
I am really shocked that a doctor feels he can dx a patient with one exam! I am shocked that he will prescribe medication for a patient he has only seen once or twice! Isn't there any follow up or anything (I live in Michigan, USA) ? Is this really how the system works?
Thanks Shawnee for your encouraging words! I appreciate it! SLE is what I pursued first since everything started with a rash. My lupus panel was negative so I assumed I could move on but I just heard from a woman that she had three done before she finally got any positive results. I'm muddled about all of it at the moment and am not thinking in any direction in particular at this point.
Maybe someday I'll have a name to put with the face of this frustrating condition!
I know that FM is supposed to be closely linked with sleep disorders. Perhaps there are other FM patients without it??
That's the thing that sucks about this condition, is that it mimicks so many others.
I live in Canada so I'm not sure if it's different in the US. My family doctor diagnosed me, then sent me to a rheumatologist for confirmation. He went over my whole health history with me, along with all my reports since my symptoms started. He did the tender points test. He then agreed with the diagnosis and will be sending a report with his recommendations to my family doctor. Sometimes people followup with the rheumy but when I asked him who I should be following up with, he said if he thought there was more he could do, he would, but it would be easier and better to follow up with my own dr.
I have a rash on my back and across my breasts that's been there for years now. I've been to a dermatologist and taken several prescriptions but nothing works. My blood tests also all came back negative.
I can't even tell you how much I HATE the label of a "pain disorder"! It's like a wall has fallen between me and any hope of a different dx. I post on lupus, RA and MS sites and hear the same replies that I get here when I list my symptoms; everyone can relate. So how do people KNOW they have FM? What distiguishes it from anything else?
I know someone who is dxed with RA and have NEVER had a swollen joint or ANY sign of joint destruction! She had one flare up (of all over achiness and fatigue) and now lives a pain free life being treated for a disease she's not even experiencing symptoms of.
I know a person who is being treated for lupus because she has achy joints, fatigue and a positive ANA. She has NO other symptoms.
I know a person who has MS who tells me that I have more symptoms of MS than she does.
I WISH that I ONLY had achy joints, some fatigue and a little numbness! Yet I'm brushed off entirely and told to take antidepressants which I can't take because I'm hoping to be pregnant in the near future.
I have absolutely NO anxiety/depression, no IBS, no TMJ, no neck pain, no sleep disorders, no headaches, no tender points. Are these not the distinguishing features of FM and other "pain disorders"?
Sorry about the frustrated tone of this post but it is definately reflecting my emotions at the moment (normally I'm much less emotional and more level headed). I'm reaching the one year mark (end of this month is when I had my first serious flare) and it's aggravating to not have any more answers now than I did then.
Well, Anyway, thanks for listening and I do hope you all have a wonderful day!
My first thought when reading your symptoms and seeing the part about the lesions was Lyme disease. Why on earth would your dr not want to test you for it? Hmmm.... Is there another dr or a clinic you could have the testing done at, just for peace of mind? I know that if I were a dr, I'd want all the bases covered, before making a diagnosis.
Sounds like an autoimmune disease to me. Also, blood results for these diseases do not always show up as positive so quickly. It took me almost 17 years of suffering off and on before I was diagnosed with lupus and fibromyalgia.
Best to have the tests repeated when you are in a flare. Please see another doctor, preferably a Rheumatologist. That is rediculous that they will not test you for lyme titer. Demand it.
I agree with demanding that you be tested for all other relevant conditions. The thing with FM that you have to remember (if you indeed have it) is that it is a very individulaized condition. Every patient is different with different symptoms. Not everyone will have TMJ, IBS, etc. The one thing that we all do have in common, at the very least, is the tender points. If you do not have any of these, I would be storming into your doctor's office or switching doctors. My doctor did not hesitate to run x-rays, CT Scans, MRI's and blood work. It sounds to me like your doc doesn't have your best interests at heart.
Thank you all so much for helping me weed through all of this. I will be calling my rheumy tomorrow again about the Lyme test. I so appreciate the encouragement! If I've learned anything through all of this it's to be assertive but I've lost my will a little bit during this flare.
First, I want to say how sorry I am that you lost your baby. That is a terrible loss no matter how many children you have.
Second, you absolutely must get checked for lyme disease! (I know your working on that)
I know this may sound strange but have you ever had your estrogen/progesterone levels tested? I donít think that it would cause all of these symptoms but having been pregnant six times can really throw your hormones for a loop.
I have diagnosed FM and probably have SLE also...but I also have five kids and my estrogen was way out of whack a few years back. When I got it where it should be it made a huge difference in my pain level and though it didnít eliminate them it diminished them considerably.
Hormone imbalances can cause all kinds of symptoms that are many times brushed off as depression or anxiety or stress.
Sounds silly but I do counseling with women and have actually seen women almost completely incapacitated by hormone imbalances it can cause severe joint pain, hives, rashes, chills, hot flashes, insomnia, dry eyes and other symptoms that can mimic autoimmune diseases and FM.
You may have more than one thing going on here; I would keep bugging my Dr. for answers or find a new Dr. Donít let the doctors dissuade you, keep pressing on until you have the answers.
Hi...you do have something going on that is auto immune, in my opinion. Those circular rashes sound like a Lupus rash.
I have Lupus, have horrible joint pain and have never once had visible swelling, swelling is not part of the criteria.
Do you know for sure that your ANA was completely negative? MY first one was a low positive, but they told me it was negative...demand copies of all labs. Fibro Dx's are made when everything else is ruled out.
It took 18 months for enough criteria to show up for me.
I know we FM folks can get tired of hearing other people guess what we might have and what to do, (oh yes, my brother's girlfriend's cousin had this and she ate oatmeal in the morning and was fine!), but I was reading about a condition that typically involves the SI joint, shoulders, swelling,stiffness that gets worse with inactivity and irritated eyes. Might be something you would want to check out. It's called spondylitis...not a good thing to have, but the treatment looks a lot different from that used for FM, so knowing might help.
Your description just rang a bell so I thought I'd mention it. I wish you all the best.
I can relate so much to what you are all saying...
I too need to go in and more actively pursue a second opinion, further testing, etc... but also feel like I just can't stand another negative test and honestly I'm still paying $10 a month to about 7 places as it is from the last set of tests. I simply can't afford more right now. I am still hurting and without any answers but very frustrated and just sort of fed up with visits to doctors and tests as well.
I thought I would add that I think it's very intriguing that doctors do not diagnose Lupus or other autoimmunes easily, they tip toe around it and misdiagnose several times usually before they get it right. However, you can have a fibro diagnosis (and therefore a seeming disregard for other symptoms fibro doesn't emcompass) within just a few minutes. Crazy logic isn't it?
I wish they understood this stuff better than they do.
Try getting tested for food sensitivities - not food allergies - Food sensitivities show up days later after you have eaten something, making it hard to find the culprit. If you are sensitive to a certain food, it will cause havoc to your immune system, just like a regular allergy. Maybe something to check into. I couldn't hurt!