Do my symptoms sound like fibromyalgia?

Discussion in 'Fibromyalgia Main Forum' started by cristinamaria, Apr 28, 2011.

  1. cristinamaria

    cristinamaria New Member

    Hello all! :) I'm in search of your thoughts on my symptoms and if they sound like they correspond with fibromyalgia as all of you know and experience it.

    I've been shuffled from doctor to doctor for about two years with tenderness to the touch. If I take my finger and poke myself, pretty much anywhere on my body, it hurts. If I'm not pushing on a spot, it doesn't hurt. "Tender" is the best way I can describe it — it's not achy otherwise, I'm not stiff in the morning, and I wouldn't describe it as throbbing or burning or shooting or stabbing pain. It just hurts, surface-level, when pressure is applied. So lying on my side is painful for my hip, for instance, but when I stand up I'm fine again after a few minutes for the lingering pain to dissipate. The main spots I notice, in the course of a day, are my hips and my sides, mainly from the shapes of seat chairs and the like, but if my husband massages me anywhere on my body it's pretty awful pain-wise. Like the thought of a full-body massage is just horrifying.

    After a primary care physician, a foot doctor, a bone doctor, a nerve doctor, a muscle doctor and a rheumatologist, plus blood tests, bone scans and nerve tests, they landed on fibrositis. I'm not entirely convinced I belong in that diagnosis. I certainly feel pain when they press the tender points, but I also hurt the same way right next to the tender point, and five inches away from the tender point, and in other points entirely... Reading all of your stories and posts, I relate sometimes but not always — I don't have the unique fatigue, digestion problems, depression, or cognitive function issues that many of you have. It hurts pretty much the same no matter what I ate that day, or how stressed out I am, etc.

    I'm currently 27, normal BMI, trying to stay healthy.
    EMG/nerve conduction test: normal
    Bone scan of legs: showed inflammation like that of after exercise (but I'd done nothing that day), but nothing conclusive
    Blood tests: Positive ANA on a general test, but then they did the more specific tests and found nothing. But they were hesitant to call it a false positive.
    Drugs that didn't work: Naproxen, Piroxicam.
    Currently taking Gabapentin, in third week. Still hurts when I poke me, don't know how long it generally takes to kick in?
    Family history of all kinds of cancers and generally crappy luck.

    Maybe I do belong here and I'm just in denial! I just don't want to land on a diagnosis that's not right at the expense of finding out some other thing that's actually wrong with me.

    Thanks in advance for your help, and thanks for all of the wonderfully helpful tips and stories you've all shared about how you go on with things when doctors and family and friends secretly think you're mental.
    [This Message was Edited on 04/28/2011]
  2. earthdog2000

    earthdog2000 Member

    Hi Cristina!
    I have had fibro and CFS for 12 years along with other DD's. I just recently came back to this website and I'm so glad I did!! The people here are super supportive and you should get some really good advice, opinions, etc.! Personally, when I was first dx'd with the fibro I was like you with the pressure point/tender spots. Even though my sister had fibro I was in denial at first until I had a 2nd opinion from my internal med. dr. ( the first was from a pain specialist/ acupuncture dr. )

    I was dx'd by my regular dr. for the CFS in 1998 and then about 6 months later with the fibro. I realized that I was confused about the fibro because I was already having almost all of the symptoms of the CFS! To make a long story short it may be possible that you are in the very early stages of fibro and if so are very lucky.......because you have a very good chance of not getting worse or at least getting on the right meds right off the bat! Not sure if I'm making a lot of sense or not but this is just my opinion.

    This message board and the other tools you can use thru this website are amazing as far as keeping up on all of the newest research, meds, homeopathic remedies etc. The people here have SO much to offer whether it be advice, opinions or just even a really good place to vent! You should get a lot of replies on this post so Good Luck and God Bless! I hope I helped some.....

    Faith and Hope, Julie ( Earthdog )

    P.S. Don't forget to let us know how you are doing! :)
    [This Message was Edited on 04/30/2011]
  3. Sacajawea2

    Sacajawea2 Member

    Hi C,

    A few years ago I sought out the help of a therapist, and wanted someone who could at least work with how my life was impacted by my health. The psychologist had exactly your symtoms, the way you describe, including a positive ANA with no conclusive results. She had many areas that were addition I do remember at times her pain was way more than just tender.

    She didn't have unusual fatigue, nor brain fog, trouble sleeping and was able to run her practice successfully despite the terrible pain. We even had the same rheumitologist for awhile. She was not ever diagnoed with Fibromyalgia but rather MPS, myofacial pain syndrome. Has any doctor suggested that? I don't think she ever got a complete diagnosis but that's the only thing they ever came up with, since I last saw her a few years ago. So she could identify with my pain, but not the debilitating fatigue, but was helpful anyway.

    Sometimes I'm a lot more tender to the touch if I've had too much caffeine or not enough water.

    I have tender points in many places but I found massage back when I could afford it to be wonderful in helping me cope. I had found a gal who knew all about Fibromyalgia and she was very start with.

    I hope you find what you're looking for.
    Do you have problems sleeping?

    Hope you find some answers,

  4. ilovepink4

    ilovepink4 Member

    Hi Christinamaria, you could be in the early stages of Fibro....i had a nurse practitioner tell me she thought I had fibro about 4 yrs before it blew up and I was diagnosed....

    When i was getting bad, it went on for about a year and i was exhausted all the time and my back was always hurting....that is what I was goign to the doc for and eventually got a diagnosis of myofascial pain sydnrome and then fibro.....

    after the exhaustion kicked in, i started to have to take naps and numbness started on my face and hands, arms, and back of my legs....the doc thought i had MS and so did my physical therapist....i had MRI's and they were my doc diagnosed the myofascial and then later at a pain clinic the doc there diagnosed fibro....

    When things were getting bad, I also began to feel like I had the body aches from the flu...all the time....i would get the chills sometimes and my armpits felt like they were swollen and hurting....the lymph nodes were swollen.

    Now, i don't feel that bad all the time since I wear fentanyl patches , which are pain patches that deliver an opiod? type of pain killer....not like novacaine....where it just numbs the spot it is on....deciding to use these patches is a big deal since it is difficult to wean off of them if you eventually have to or want to....

    i also take percocet around the clock...and a tinydose of effexor, an anti depressant...then klonopin for sleep and xanax for anxiety and a whole mess of vitamins and supplements..

    i don't like taking anti depressants because of the side effects....i refuse to try lyrica....i am just cautious now since most of the medicines have side effects that bother put somethought into whether you really want to try a new RX or not...

    Good luck with your journey.....maybe you have Lyme...lots of ppl are mistakenly diagnosed with fibro when they have lyme disease....that might explain why you have similiar but not exact symptoms...

    i think it would be better if you had lyme disease since you can at least take antibiotics for that and have hope it will be cured....

  5. JLH

    JLH New Member

    The symptoms of fibro are many and everyone doesn't have the same ones. As someone has already mentioned, you may be in the early stages of fibro.

    I hurt every place on my body that you touch ... just as you described.

    If you had a positive ANA, it could be Lupus. A lot of the lupus symptoms overlap with the fibro symptoms. I have both problems. I would talk with your doctor re lupus as it relates to your positive ANA.

    What helps me, as much as it possibly can, for the fibro is Neurotin (Gabapentin), Cymbalta, and Zanaflex at bedtime to help me sleep. Elavil is also a good med to help you sleep if you have trouble sleeping. I take Plaquenil for the lupus to prevent more damage.

    No matter what you take, or how much, you will always hurt when someone presses down on your muscles. Ugh!
  6. cristinamaria

    cristinamaria New Member

    Thank you everyone for your suggestions and advice. It's so helpful to hear from people going through it.

    I'm looking into some of the things you all mentioned, including nutritional deficiency and MPS. I think I want to get a full nutritional workup to see what's up there.

    I don't think I'm having problems sleeping due to my pain — if anything I'm way sleepy a lot from the Gabapentin. They've upped my dosage since it wasn't having much effect, so we'll see if it does anything more than leave me whacked out all of the time.

    JLH, does your pain change based on stress level, food choices, or anything like that? Mine is always the same, no matter the stress I'm going through or what I did/ate that day.

    After the positive ANA, they did all the autoimmune blood tests for lupus etc., but nothing came back positive. Is that something that fluctuates, or are you always positive if you have lupus?

    Sigh. I'll be honest that your answers have been very helpful but also very discouraging. In most of your stories, you only worsened as time went by. Is this true with most fibro people? Or do some stay pretty constant? I just really hate the thought of never getting past this.
  7. JLH

    JLH New Member

    My pain is always bad, but when it changes, it is just worse from doing too much of something! I don't think the stress will make my pain worse, unless it's physical stress, and I have never noticed food choices making a difference. I have so much wrong with me that sometimes I don't know what is making the pain worse!!

    I have severe osteoarthritis in all my joints, too, especially in my back, neck, shoulders, and knees. When the weather patterns change, it causes the arthritis to flare up.

    I have systemic lupus (SLE) but yet my ANA tests will sometimes show up negative. I have had lupus for decades. The lupus has affected all my joints and it did not start affecting my organs until about 1996 when I first started having heart trouble. It has affected my skin, heart, and is starting on my kidneys. Of course, it doesn't help that I have diabetes, too.

    I think people say that their fibro has gotten worse over time because your life changes as you get older ... you get more kids, and the more kids you have, the harder you work around the house, etc ... if you work outside the home, the older you get, the more responsibility you gain on your job, etc. ... so all this physical and emotional stress starts to take its toll on you and your fibro gets worse because of it.

    I worked 30+ years outside the home and raised 3 children and a husband. During the last 10 years of my employment and the kids all at home, my body almost died on me because it had so many problems and was in so much pain ... now that all the children are all through college, married, and out of the house on their own, and I have retired, my pain level has decreased a lot ... however, my other medical problems have gotten worse, but at least I don't have to work a stressful job for 12 hrs/day, drive a total of 2.5 hrs. commute, and then a few more hours work when I get home!!! Being retired has saved my life ... I would have been dead from a heart attack if I were still working!! For sure ... thank God I was able to take early retirement in 1999!!!
  8. Janalynn

    Janalynn New Member

    Hi there!
    Reading everything can be overwhelming. One thing to remember is that you're on a message board, you're reading from a group of people who are all talking about their symptoms etc., but remember there are thousands of people walking around everyday who have Fibro (and many other things) and living life!

    Could you have Fibro? yes, but your Dr.'s may not know what you have and you may have been thrown into the Fibro "bucket", which really sucks especially for those who really do have Fibro. =)

    This is NOT to be discouraging by any means, but I'm not sure what being in the early stages and being lucky about it means, we were all there at one time and how it progresses - although it's technically not supposed to be progressive, is how it's going to progress. It's not like you can stop it by catching it early.

    Sleep issues are very common with Fibro, actually it's a BIG symptom. Not necessarily because of pain though. We just don't get refreshing sleep. Do you get a normal night's sleep?

    I get it about the tender points. I have them, but I am tender wherever you push on me. I also can't bear the thought of a massage. I however have incredible aches in my hips and legs.

    When you say your hips hurt when you wake up, does it feel like it's down to the bone or just your skin?

    There are a lot of things that can mimic Fibro. So many things have overlapping symptoms. If you do have it, it's not fatal, there is no damage to your body, and there is a lot of research being done.
    Rest and as little stress as possible is super important!!

    I'm a mother of two grown boys (18 and 23), worked most of my adult life, work part time now, have had a wonderful full life, loving incredible family. I've had Fibro definitely that I can remember since I was about 21, probably sooner than that.

    See if there are any Dr's in your area who have experience in Fibro and get a second opinion, that's what I'd do. It sounds like you need some peace of mind. Who is treating you now, a rheumatologist or your regular Dr.? do you have the opportunity to ask more in depth questions any time soon? I'd write up a list for your next appointment, maybe outlining what you've read, how you don't have many/most of the symptoms you've read about. See what they say.

    Good Luck to you. I hope you'll let us know how things go!