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Posted 1/9/2011 1:19 PM (GMT 0)
Hi everyone! 

I am new here and have confusion about my recent diagonsis.  My PCP thinks I have Sjogren's but tests are negative, although she still feels strongly that is what I have and its just not showing yet.  The rheumatologist she sent me to disagreed and from the start of the office visit with rheumy she was all about fibromyalgia (she completely ignored many of my symptoms such as dry eye, dry mouth, dry skin, skin rashes and lesions, extreme sun sensitivity, joint pain, repeatedly abnormal urinalysis) and the only tender points that hurt on me are right by my spine (which I know will hurt because I have a spinal injury with many disc problems and compression pains) and the rest were uncomfortable but not painful.  I am also very small for my age (31) at 5'2", 98lbs, so it would reason that pressure on me would feel uncomfortable to someone that is not nearly so bony.

My question is: Can you have fibromyalgia and have no muscle pain (of any kind, except the right side of my neck due to spine) and no tender points away from the spine (I don't trust the ones next to the spine)? I also don't have sleeping problems all the time, usually I do when my joint pains flare up (usually worse after being outside) or neck compression flares, but it is not a regular problem for me.

I appreciate any information you can give.  I just recently saw my PCP and she said that she is not convinced that I have fibromyalgia either, but the appointment with the rheumatologist is coming up and I would like to have some information from people that actually live with this to take with me and hopefully convince her to continue testing.

Posted 1/9/2011 5:32 PM (GMT 0)
Hi, Othello, and welcome!  I've never heard of people not having pain with fibromyalgia.  It gets it's name because it affect "fibers" of the body....muscles, tendons, and ligaments.  There are plenty of other symptoms too, but pain is usually the main hallmark...that and fatigue.

 

Be sure to read Fibro 101...the first thread on the forum.  There are links about fibro and you will learn a lot there.  There is even a link of symptoms.  Another good link for you is called A Thorough Explanation of Fibromyalgia.  Check those out and you will see what I mean.

 

I'm glad  you joined the forum and don't hesitate to ask questions because we are here to help you.  Please let us know what you find out about your symptoms.  Hope to hear more from you soon. 

 

Sherrine

Posted 1/9/2011 6:15 PM (GMT 0)
Hi Sherrine and thanks for responding.

I do have pain, but it is absolutley in the joints, no muscle pain at all. I read the first thread and found it helpful and interesting. I have read that it often is compared to having the flu, and I do not feel like that, the only time I have muscle pain (other than my neck) is when I overwork them. My hands and feet (fingers, wrists, toes, ankles) hurt the worst and daily, my other joints take turns deciding which is going to hurt and when. I always feel much worse the day after I have spent time outside, yesterday I played outside with the kids and today I am exhausted and my joints hurt even more.

I am suppose to go back to this rheumy in February, but I am unsure if I want to waste the time and money to go all the way there (I live an hour drive away) just to be told to do yoga (I have and there is no difference in my pain location or level). The med I was on for migraine prevention (amitriptyline) had to be stopped because I could not stay awake and kept falling asleep at work. I called the rheumys office and told them that I stopped (this med was suppose to help fibro, it did nothing for my pain) and they never even called me back. This is all so frustrating because I need a doctor that will actually listen to me and treat my symptoms, not assume I have fibro (which my PCP doesn't think I have fibro at all) because it is convinient. I could not imagine feeling like I had the flu everyday, this dryness, constant headache, and joint pain are difficult enough to deal with on a daily basis.

Aryn
Posted 1/9/2011 6:30 PM (GMT 0)
Aryn, with fibro, it can feel like it's your joints that are hurting but in fact it is the muscles, tendons, and ligaments that move your fingers, arms, etc. that are hurting.  If it's your joints, they can check for that.  Usually there is heat in the joint, I believe, and damage to the joint, too.  Your rheumy can tell from testing.  If they have done this already and said it is fibro, then it does make sense. 

 

Be sure to read the link called What Else Could It Be.  These are the illnesses they need to rule out before a diagnosis of fibro is given.  You see, we have many of the same symptoms as some of these other illnesses but they can be treated more effectively.  So,  you want to make sure you are being treated for the right illness.  Fibro sure is confusing, isn't it!

 

Sherrine

Posted 1/9/2011 6:54 PM (GMT 0)
Hi Aryn and welcome to our fibro family, we have a great bunch of people here that are always willing to be helpful and supportive. As Sherrine said there isnt a day that goes by where I have no pain at all but there are days where it is much more tolerable than others. I hope you get answers soon. Feel free to ask questions, vent when you need to or offer support to others. Please keep us updated as to how you are doing.
Gentle Hugs
Shirley
Posted 1/9/2011 7:09 PM (GMT 0)
I am certain the pain in from inflammation because NSAID's relieve the worst of the pain and I had a high sed rate. My autoimmune came back negative, but PCP told me it can take a long time for them to show in the blood. My joints also crack and pop often, sometimes it is painful and others it does not hurt.

Does anyone have problems with the sun because of fibro? I have never heard or read of this being associated with it and everytime I go outside I get a rash within a few minutes and if I stay out for any amount of time I end up feeling much worse the next week. This is with sunblock on (I wear 100 SPF).

Is it normal to have one rheumy appointment and get diagonsed with fibro? I saw my rheumy once (looking for another one because I don't feel comfortable with this one) and she told me I had fibro, before deciding to do some more blood tests. She gave me no meds, only told me to do yoga (which is not doing anything for pain, probably because it is not muscular) and come back in three months.

I have days that are close to pain free (I have had a constant headache for 20 years because of spine) and also sleep well more often than not. I have read that sleep is a problem with fibro. Does anyone sleep well regularly without meds? I have no sleep meds and don't have problems sleeping unless joints are really bad.

Sorry so long and so many questions, I just want to have lots of information from people that actually have to deal with this on a daily basis before my next doctor appointment. I don't want to be misdiagnosed and have something happen that could be avoided by looking for the cause of my problems.
Posted 1/9/2011 7:25 PM (GMT 0)
I don't see how that rheumy could diagnose you without running tests first.  I think I'd find another rheumy or another doctor.  I have a board certified Internist that handles my fibro.  You want to make sure the doctor treats fibro, too.  There are still doctors out there that are in the Dark Ages.  I don't blame you for wondering. 

 

We can be sensitive to light but I haven't heard of getting a rash when you go out in the sun.  Maybe it's being caused by some medication you are taking.  I sit in the sun all summer because I live in Florida and have a pool and I don't have that problem...obviously!

 

I do not take sleep medications.  I have myself on a sleep schedule and that works for me but I doze more than get in a deep sleep.  I rarely dream.  I also wake up several times during the night but I fall right back to sleep.

 

BUT, you do need for the doctor to rule out other illnesses before giving the fibro diagnosis.  Like I said previously, we have many of the same symptoms as other illnesses.  We have had members here that were diagnosed as having fibro when they actually had either Lyme or lupus.  So, do  your homework when choosing a doctor.  Try to get the best doctor you can.  Just because the have "M.D." after their name doesn't mean they are good.  As one mod has said, fifty percent of the doctors graduated in the lower half of their class and yours could be one of them.

 

Sherrine

Posted 1/9/2011 7:44 PM (GMT 0)
Hi Aryn, welcome to the forum.

I'm sorry for your pain and frustration. I think you should continue to see the rheumy. Autoimmune connective tissue diseases aren't easily diagnosed, neither is fibro...that is why it takes so long to get a diagnosis. Sometimes people have both and it gets complicated. Bloodwork can change and so can your
symptoms. You can have an autoimmune disease with - ANA.

I get rashes and lesions associated with the lupus part of mixed connective tissue disease...I get them when I'm flaring sometimes. I also have fibro.

Take pictures of rashes or any swelling you get, and bring them
with you to the docs. It really helps! Also write down all your symptoms and questions you have.

Getting a diagnosis may take time but it is important that the diagnosis is correct so that you get proper treatment.

Good luck to you!

Hugs, Robin
Posted 1/9/2011 7:56 PM (GMT 0)
The sun sensitivity is not caused by any meds, because I don't take any regularly (vicodin, flexeril as needed for neck pain). I am hoping to find a new rheumy that takes my insurance. I still have not had the lip biop done even though my PCP mentioned that this test is the best for determining Sjogren's, but the rheumy decided on fibro and stuck to it. I asked her about more tests and she said I don't need them, I don't think I need her.

I only wake up once or twice during most nights, usually because something went numb (spine again) and I have to move, the move is not painful either. I don't have a sleep schedule, but the kids often get up at the same time everyday (they are 1 and 3) so I don't worry about getting up at the same time. Some nights I am falling asleep at 7 other times I can stay up much later. The extreme exhaustion also comes after being out in the sun, its like some kind of trigger for whatever this is, and I don't go outside for fun very often anymore. I have learned to skate at an indoor rink on the weekends, but sometimes I really miss skating on the lake just because of how quite and peaceful it is out there.

I forgot to include some abnormal test results, low WBC, low RBC, low hemoglobin (PCP said I am borderline anemic) and the urinalysis keeps coming back positive for blood, some protein, and WBC and the culture keeps coming back negative. The rheumy has my chart but never did a urinalysis which seemed odd to me as PCP does one every time I see her. Does anyone know if these test results are normal for fibro? (I read that fibro is diagnosed after tests are all normal, but the cbc was not way off, mostly borderline low.

I think my rheumy may very well have been in the lower half of her class, even my PCP was shocked by the diagnosis and lack of other testing (besides blood) before making the diagnosis. I have been tested for lyme and lupus (western blot and ana were negative) as well as many other diseases and (as far as I know because she forgot to send me copies of the lab report) were all negative.

I really appreciate your help, and I feel better knowing that other people agree that I need a new rheumy.
Posted 1/9/2011 10:36 PM (GMT 0)
Hi Robin,

My PCP also told me that it can take a long time to get a diagnosis and she was hoping that the rheumy would treat my symptoms while the search continues, but that has not happened yet. I also get rashes, mostly on my legs (unless I am in the sun then its whatever is exposed) and may have a light butterfly rash on my face that never goes away, just gets darker and fades again.

It is all so confusing because I was reading a lot when I was first being tested and got fibro diagnosis and a lot of it is conflicting. I actually saw one fibro symptoms list that seemed to include every possible discomfort/ailment there is which is crazy and the list was pages long. I did make a list of my symptoms which I started in August and ended up giving my PCP about seven typed pages (symptoms, family history, my medical history) that were mostly symptoms.

Do you ever get very small lesions on your scalp? I often rub my head (dry scalp and I try not to scratch it so I rub instead) and feel sensitive bumps or sometimes I just feel something rough that turns out to be dried blood. This freaked me out the first couple times and I got checked for bugs but there were none. (I am obsessed with clean for myself and my house!) I don't know anyone else that gets these, and I am very careful with my scalp (again because of dryness) and use a baby shampoo and lukewarm water to wash it, I only brush it gently once a day, I do not use a hair dryer or any styling products or irons.

I really appreciate your information, and I will make a note to take a pic of the rashes as they appear. Its very nice to know that there are people I can ask about this since my rheumy has not been at all helpful.
Posted 1/10/2011 12:08 AM (GMT 0)
Aryn, it is very confusing because of all the simular symptoms.
Symptoms can come and go ie, rashes and swelling.

My rashes are usually on my chest and neck area. I have had lesions, small scaly sores in my hairline and sometimes on my
face. We are all unique and symptoms can vary.

It is important to stay as proactive as you can, asking your docs lots of questions.

Wishing you the best

Hugs, Robin
Posted 1/10/2011 8:36 PM (GMT 0)
I have been diagnosed with fibro and even after several visits and other weird symptoms my rheumy still sticks by that diagnosis. BUT, he also thinks something else is going on and sent me to a neurologist. We are still trying to find out what it is that I may have/have not.

I think that I have sjogrens too but the blood work always comes up negative. My rheumy and neuro are not giving up. From what I understand it can take several years, and many tests to confirm it.
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