Newly diagnosed - Advice requested

Discussion in 'Fibromyalgia Main Forum' started by julie0830, Jun 8, 2011.

  1. julie0830

    julie0830 New Member

    So I'd never really admitted - for years - that I might have fibromyalgia. It started in just my shoulders where it basically hurt for anyone to touch them - I just thought it was stress. That over the last month when I stand up my feet feel about 3 sizes bigger and numbness and tingling. Now I basically walk around all day feeling like I have the flu. It's exhausting to stand and water the flowers. So I finally sucked it up and spoke about it to my doctor who put me on Cymbalta (have had depression for years) My leg muscles feel cramped all the time when I first stand up. Is this normal for fibromyalgia? I guess I'm just not sure what's going on with all of this. Is this chronic disease or does it eventually go away? Any answers out there?

  2. Nanie46

    Nanie46 Moderator

    My best advice is to find the actual cause of your symptoms, which is likely one or more infectious pathogens.

    Many people here have found out that they actually have a chronic Borrelia burgdorferi (lyme disease) infection, along with it's common coinfections like Bartonella, Babesia, and Ehrlichia.

    The most common symptoms of lyme are fatigue, pain, and thinking problems....but there can be many symptoms.

    I had only a FM diagnosis for 21 years before discovering through my own research that I had been infected with lyme, bartonella and rocky mt spotted fever.

    I never even saw a tick bite or a rash....and all my lyme tests were negative. That's because testing for lyme is so unreliable.

    Unfortunately 99% of Dr's are not lyme literate and would never be able to diagnose you.

    There are some Lyme Literate MD's that can give you a proper eval for tick-borne diseases.

    With a FM diagnosis you will remain sick forever because Dr's do not care to look for the cause so they can treat it.

    Please do yourself a favor and read this information. It could change your life....

    this first one contains really good info and has a great symptom list:

    This Prohealth article written by Dr Holtorf states that people with FM or CFS diagnosis should consider lyme disease as the cause....

    The next one is the "Bible" of Lyme treatment...also contains a great symptom list and has info on pages 22-27 about the coinfections like Bartonella, Babesia, Ehrlichia,etc....

    I also urge you to go to on flash discussion....sign up for on the Medical Questions board.....then click on Post New Topic......create a post telling about your history, symptoms and diagnosis. You will get alot of intelligent input.

    You can find a Lyme literate MD on's Seeking a Doctor Board by posting a request for a LLMD in your state.

  3. earthdog2000

    earthdog2000 Member

    Hi Julie!

    My name is Julie too and there are a few other's that I know of on this board! First off I want to say WELCOME, you found a really awesome website and a fantastic message board! It moves pretty fast which is nice because you don't usually have to wait long for replies when you post and when you reply it is truly appreciated. I'm very sorry to hear that you have fibro but there is a wealth of information on this website so I say, use it as much as you can when you feel up to it!

    As far as your symtoms go, most people with fibro do suffer from muscle pain, stiffness and or cramps. I personally have stiffness in my left shoulder and neck and get cramps in my legs mostly and just mild to moderate pain at times. When I was first diagnosed I was in a lot of pain but have learned what works for me and what does not. We all have good days and bad days and learn to manage. Make sure your dr. gets you on some good pain meds and or supplements to help you with the pain and other symptoms. The tingling and numbness for me is more related to stress, anxiety or Panic Disorder, which I have too.

    Feeling like you have the flu is very common too and also in CFS. There are so many symptoms that differ from one person to the next. It is best to look them up on this website and to definetely get a list from your dr.
    You should get some really good responses here and this board moves pretty fast. I find that sometimes when I post something it's really hard to keep up with replying back but always appreciated!

    By the way, I take Cymbalta too and it works very good on my depression as well as anxiety. I also take Klonipin to help me sleep or when I am feeling the anxiety or a panic attack coming on. I will take a half and it seems to help a lot! There are so many meds, vitamens and supplements you can take and you will learn this through trial and error but that is where your dr. comes in too. Do you see a psychiatrist or a counselor for the depression? I do and it as helped me sooooo much esp. since he is such a great dr., I have been seeing him for 12 years! I am also very fortunate to have a great female internal medicine dr. who is my regular doc.

    Well, I hope that I helped some and keep us all posted. I look forward to hearing how you are doing!

    Faith, Hope and Healing, Julie a.k.a. Earthdog, hehehe

    P.S. So far there is no cure for fibro but there are scientists, doctors and others researching and doing studies all the time so maybe one day soon they will find a cure or at least the right meds to control fibro! I am and will always be hopeful!! :)

    [This Message was Edited on 06/08/2011]
  4. pamelakc

    pamelakc New Member

    I also have fibro and the numbness and muscle pain is normal for fibro. Cymbalta is a good medicine and so is Lyrica. I am also on Vicodin 5-325 (for Pain) Soma 325 (for muscle spasms) and Lyrica didn't work well for my leg and foot pain so I am on Neurontin 600mg (for leg and foot pain). I will admit you may have problems finding a dr that will give you these meds. I have been lucky so far but I am about to ask him to raise my dose of Vicodin been on the same dose for a few years and it ain't working as well anymore. Also for so patients this will go into remission and for some it seems to get worse. My had not been in total remission but almost and now I am in more Pain than I have ever been. So I think off and on it will be in your life or possibly always there, sorry. Best wishes and Gentle Hugs to You Pamela
  5. julie0830

    julie0830 New Member

    thanks so much for your response. My doc is not ig on drugs as a rule and hasn't ever given me anything for sleep - just says to exercise more which is sometimes easier said than done. I definitely think my pain is mild as I can't imagine taking any narcotics - they all make me itch. it's the generally feeling like I've got the flu that stinks. I do take melatonin with theonine to sleep and that seems to help. I'd seen therapists several times over the years. My 'issues' are pretty much under control, it's simply the chemical imbalance at this point. Again, thanks so much for your response.
  6. julie0830

    julie0830 New Member

    I have hypothyroidism as well but the numers say it's within normal range with meds. She took a Vit D level and didn't tell me but by not mentioning it I assume it's normal. I guess I should ask. Good advise about the magnesium - I'll give it a try.
  7. julie0830

    julie0830 New Member

    cool. I'll check that out. This is all a bit overwhelming.
  8. julie0830

    julie0830 New Member

    Great! Something to look forward to despite your basic old age problems. I had assumed that my word losing etc was the result of menopause but it appears to be a combination of both. Today it was 98 degrees here and I had the ac in my car on my face and the heated seat on for the aches. That is just wrong. thanks for the response. Gentle hugs - a great statement - thanks and same to you.