Weird symptoms - any ideas?

Discussion in 'Fibromyalgia Main Forum' started by kellyjk4, Mar 27, 2009.

  1. kellyjk4

    kellyjk4 New Member

    I've had fm since childhood, diagnosed in 1997 at age 28, with lots of ups and downs (like everyone else). For the past 1-1/2 yrs I've been able to handle things with Lyrica and Norco, with Imitrex for migraines and Soma for sleep. Last year, I was diagnosed with Trigeminal Neuralgia and put on Trileptal. For the last three months, I've had a feeling of pins and needles in both my feet. I'm experiencing extreme fatigue, urinary retention, memory problems, balance problems, and an intense pressure in my thoracic spine area. Does anyone have any ideas? Can fibro do all of this to a person? My neurologist thinks I'm "depressed" - no kidding! Even though I cried when he said that, it's kind of funny in a completely ridiculous way. He'd probably be depressed too if he felt that way I do now. Anyway, if anyone has suggestions or ideas, I'd love to hear them. Thanks, Kelly
  2. 3gs

    3gs New Member

    Hi Kelly

    I have every symptom you described. I have Fibro?CFS. This dd causes so many weird symptoms. the list is long.

    Have you had your vitd levels cked? Grapeseed extract d3 calicum-magniesum and MSM are good supps.

    Its not in your head! also my NUCCA chiro helps
    [This Message was Edited on 03/27/2009]
  3. vivian53

    vivian53 Member

    I am sorry to hear that you are feeling so badly. I wanted to respond to your post because we have similar circumstances. I know I am depressed with this DD and believe that is a normal reaction given it's disabling effects.

    I have SSDI now but when I went to their doctor he told me I had nothing wrong with me except depression. I cried then too because I was so frustrated. It is kinda funny in a way looking back on the incident. I'm sure my crying just confirmed his diagnosis. Oh well. That's two doctors that told me I had nothing wrong. They were very mistaken, but that's history.

    I have never heard of your dx of Trigeminal Neuralgia, but then there is tons I don't know and I'm learning a lot on this board. I am concerned about the symptoms you described. I take Lyrica and Norco. I do have some balance and memory problems, but they're not terrible and I manage. I have fatigue also but I hear you saying you had a sudden onset of these symptoms.

    Urinary retention and the intense pressure on your spine combined with the other symptoms leads me to believe you should call your doctor. Like today. I am not trying to talk down to you or give you you elementary advise but, just ask for the nurse and tell her whats going on. She'll let the doctor know and will call you back to tell you what you next step is.

    I hope you get to the bottom of this soon and feel better. Please post and tell us what you found out. I'll be looking for it. Good luck Kelly.

  4. sweetbeatlvr

    sweetbeatlvr New Member

    and the only thing i can say is, since this illness kicked into full gear for me (almost 2 years ago), i've had many ups and downs also. meaning, i've gone through alot of periods like you've described, but also gone through periods where the symptoms were alot easier to handle.

    so try to remember it (the bad, bad parts), probably won't continue forever.

    i agree, (some) doctors need to realize that feeling like this would surely make anyone feel depressed!

    i wish you the best.<3
  5. loto

    loto Member

    i've had all of those symptoms also, except the intense pressure in your spine. the only thing i know of that is wrong with me is FM, and anemia. Just wanted you to know i feel these things too, though, sorry i can't be more of a help!
  6. Nanie46

    Nanie46 Moderator


    It all sounds so familiar. I really encourage you to get a western blot from Igenex lab in CA to check for Borrelia burgdorferi infection (lyme disease). test #188 and #189.....cost $200.

    FMS (and CFS)s a syndrome....a set of symptoms given a name because Dr's didn't know what else it was. They never, however, address the cause of the illness.

    Every one of the symptoms you are complaining of is a symptom of lyme disease.

    I know because after 21 years with just a FM diagnosis, I found out through my own research, that lyme is the cause of my symptoms.

    My daughter has CFS, trigeminal neuralgia, migraines, etc and we just found out she also has lyme.

    Now we we can get treatment and look forward to recovering.

    Please feel free to leave posts for me on the lyme board if you have questions and need information.

    Check out the symptom checklist in this very good booklet:
  7. kellyjk4

    kellyjk4 New Member

    Thanks so much for your help and encouragement. I can't stop thinking about that doctor visit yesterday and how frustrating it was, even though I know that won't help me now.

    Nanie46, it's funny you should bring up lyme disease. I specifically asked him yesterday if that could be causing these symptoms, and he looked at me like I was an idiot and said no. I was actually diagnosed with lyme about five years ago, by a dr at the FFC in Dallas. I had to stop going there because it was so expensive, though. When I would tell any drs here (in San Antonio) that I have lyme disease, they all have shrugged if off. One even said "Do you have any idea how hard it is to get lyme disease?" I guess it's time to get a copy of my Igenex test and start pushing. I gave up on that before and decided to just deal with it as long as I could. Looking back, that was a rotten decision, but it's so exhausting to have to make people help you. Thanks for your offer to help; I'll probably take you up on that, since I'm not familiar with lyme at all, even though I should be. I'm sorry your daughter has TN - it's the most horrible and painful thing I've ever experienced. I wish you both the best of luck.

    I've made an appt with my primary care dr to get some blood work done, just to cover all my bases. I'm planning to ask her to check everything she possibly can (thanks, 3gs, for the Vit D idea). I've felt pretty awful before, but never so awful that I just want to give up. Lately, though, the only thing keeping me going is my family. Thank God for them.

    I'm also wondering if ME/CFS can be the culprit here? Or possibly MS?

  8. Nanie46

    Nanie46 Moderator


    You are welcome. I think you have your answer if you were already diagnosed with lyme.

    Simply put, it is a bacterial infection that can hide deep within every body tissue and organ, mostly affecting the central nervous system.

    Lyme is called the new great imitator. It can be misdiagnosed as FMS, CFS, MS, ALS, RA, Parkinson's, Alzheimers, psychiatric disorders and other illnesses.

    Almost everyone who has lyme has dealt with many uninformed Dr's who said we DID NOT have
    lyme....3 Dr's for me.....and it's all in your head, or you need a psychiatrist, etc.

    Some people have been through over 40 Dr's trying to figure out what the real source of their problem is.

    Post your igenex results and symptoms on the lyme board and also on the medical questions board at's a very active board with extremely knowledgable people...sign up for free like you did here.

    Look at the symptom checklist at the back of this booklet........

    Sounds like you need a good LLMD.
    [This Message was Edited on 03/28/2009]

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