nedd advise

Discussion in 'Fibromyalgia Main Forum' started by shannonrn, Mar 6, 2003.

  1. shannonrn

    shannonrn New Member

    Hi! I'm new to this board and I have a lot of questions regarding FM. In 1997 I started experiencing bad headaches where my skull met my neck area. These headaches were an everyday occurence. Then I started to get tingling in my hands and feet. In 1998 I started to have incredible muscle pain all over my body. My muscles would twitch all over and I would feel like I was getting static electricity shocks. I had this fatigue that I can even begin to expain. My husband would carry on a convesation with me and I couldn't even process what he was saying. I was worked up for MS for 5 years (my neurologist was convinced I had it) After 5 years everything was still negative and he told me that I did not have it. My ANA at the time was 1:80 so I went to a rheumatologist who said I did not have lupus. Then in 2002 I had my first child. I had a lbor from hell (ended up having a reaction from my epidural). Oh yeah, I felt great during pregnancy. Then 8 weeks after giving birth I started having this burning pain on the back of my neck, shoulders, upper and lower back and my feet. This has occurred 3 times since then and it last for about 2 weeks. I also have this horrible taste in my mouth. I went to the Mayo clinic which they said I have fm (but they didn't test my tender points). They also said I did not have lupus. I show no signs of the criteria to fit it. I then went to a new neurologist at home and he thoought I had chronic inflammatory demylinating polyneuropathy which those test turned up negative too. My ANA did come back 1:320 homogenous speckled pattern which he thinks I have lupus even though the Mayo clinic ruled it out in Nov. He said I do not have fibromyalgia. I don't know I am so frusterated. The constant muscle aching and burning pain is getting to be too much. Does anyone here have this burning pain? I also feel like my hands are swollen but when I look at them they're fine. Does anyone have an increased ANA and not have lupus. Is Madwolf a MD? If so can a posive ANA caused by these neuritis burning symptoms. I have no joint pain, rashes, organ involvement, abnormal cbc etc. I'm going to another rheumatologist tommorrow. I would apprecitate anyones input. Thanks
  2. pam_d

    pam_d New Member

    I understand your confusion, FM is a maddening illness....constantly changing & evolving. I have many of your symptoms, especially the neurological ones: muscle twitches all over, tingling hands & feet, hands that feel hot & swollen (FEEL inflamed, but are not), muscle pain. I know the feeling of the burning pain, but that is one I only get occasionally; the rest are pretty constant. Like you, I have seen a neurologist, neurosurgeon, 2 rheumotologists, & had brain & complete spinal MRIs, nerve conduction studies, spinal tap, complete bloodwork, etc. Everything negative, too---the only explanation given to me by my last rheumy was FM. FM is not the same for all of us, but many of us suffer from more of the neurological symptoms than anything else, & everybody's symptoms have a slightly different "tweek" to them, but we have a lot in common.

    I am certainly no MD, and I urge you to continue to pursue this (hopefully you'll find a doctor with the knowledge & confidence to nail down a diagnosis that at least gives you a starting point for treatment) but----your symptoms certainly have the ring of FM to me!

    Let us know how your rheumy appt. goes. I know how frustrating---not to mention expensive & time-consuming----it is to try and find that cause for why you feel the way you do. I hope you find some answers!

    Glad you are here; if you do have FM, you couldn't be at a better place!

    Hugs,
    Pam
  3. dawnie1960

    dawnie1960 New Member

    to hear you speak of a horrible taste in your mouth! I am going to the walk-in clinic tonight after work for this very reason!!

    I have a horrible bitter taste and my tongue is very sore, red and also has inflammed/pus look to it.

    I am also currently in the middle of a chronic outbreak of hives....going on more than a month now. Doc has put me on prednisone/benadryl/zantac/amitriptilyne, but these drugs barely help, and make me very dopey and shakey.

    And then I remembered that every time I've had a hive outbreak my tongue gets like this!! So, I'm thinking something really is floating around my body and it's trying to fight it off, resulting in the hives. (Doc's have never found a definate cause yet).

    The other thing is my whole body shaking...feels like I drank 100 cups of coffee and I'm wired for sound. It's horrible and makes me feel a little crazy. I can't see that its the drugs I'm taking that does this to me....as my drug arsonal would knock out most people!

    So, I'm hoping it is some kind of infection and that it is causing the hives and sore tongue. (sad, eh, to want to have infection...but it's better than the usual reply from doc's that "sorry, we don't know why you feel this way!")

    I also have fibro and have most of the symptoms you mention. Was dx Feb. 2003.

    Hang in there and see what the next rheumy has to say. I persisted for 15 years seeing doc after doc until I finally got the dx. And while I'm not thrilled to have this DD, I feel a whole lot better knowing I'm not crazy or a hyprocondriac!!
  4. northwoodssue

    northwoodssue New Member

    Hi Shannonrn: I'm an RN too, retired because of this DD. It sounds like you got the same run around I got for 4 years. My initial rheumy said I had a malignant form of fms which just gets worse and nothing helps, and he also thought I had lupus cause of a high titer (ANA) of l:1650. I also had other symptoms of lupus. I went to another rheumy for 2nd opinion, and he thought I had lupus plus fibro too, all according to the high ANA. He started me on plaquenil (which I was severely allergic too), and prednisone. The prednisone was wonderful. I had no pain with in 24 hours. He said that fms does not respond to prednisone, so he was sure it was lupus. He wanted to start me on methotrexate, a chemo drug and also used for RA. I was leery of this and sought anotheropinion at the great Mayo Clinic, too.
    We have that in common. I saw Dr. Steve Ytterberg, a rheum at the mayo who specializes in lupus and fms. He did a battery of tests and told me I had fms for sure, but did not have lupus. They have the most advanced ANA titer testing machine in the world, he said, and it only showed a mild elevation in my titer. So, I did not go on the chemo drug. But I am not better, steadily getting worse, and wonder if the first 2 rheumy's were right and he was not. Who do you believe????
    I guess you have to stick with one and go with it. I really don't know. But the mayo is sposed to have the most up to date doctors and tests in the world, so I am inclined to believe them. He said the other lab tests for ANA are not right and their lab test is the only one that is up to date and correct.
    So, like you, who do you trust???? I have gone with the mayo doctor's dx and just hope that it is not lupus and my body parts aren't attacking each other and destroying vital organs.
    I guess it is kinda nice to know someone else has gone thru this mess and still doesn't know what's going on. I wish the doctors were able to give the same dx for sure.
    Please post and let me know what you decide and find out. I'm really interested and best of luck.
    sue
  5. shannonrn

    shannonrn New Member

    Thank you to all who replied. I will let you know what this rheumy says today. I think the Mayo Clinic was right about not having lupus just because they see so many cases a year. It does make sense that they have the most up to date test. Did they do an ANA2 and an ENA on you? I'm not sure the difference between an ANA2 and a regular ANA are. Did you have an anti-dna done also? What are your symptoms of lupus? I'm going to a new Rheumy today so I'll let you know what he says about the whole lupus thing? I'm scared out of my mind? What meds do you take? I'll post later b/c I have a screaming baby right now.