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Lyme vs fibrommyalgia...

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Posted 5/3/2012 12:22 AM (GMT 0)
Hello,
I'm new here and honestly don't even know if I'm posting this right. Lol. But here goes. A little background I'm a 28 year old female newlywed who is a subacute rehab nurse at a local hospital. So I am quite accustomed to seeing and witnessing pain. about a year ago I felt as though I had the flu, all the body achs and pains. I called out of work and returned the next week still feeling the same. (as a nurse I am quite good at caring for others, myself not so much). So I ignored the crumy feeling until the pain started. It was a burning shooting pain in my upper back (shoulder blades), feet, hands, and the fronts of my thighs. The pain never subsided even with OTC medications. I couldn't even open medicine bottles at work to do my med pass! In the am i was soooooo stiff i could barely get out of bed and relyed on my then fiance to ease me up. I was so depressed anxious all the time and cried over absolutely everything! It was out of control. I finally caved thinking I had FM or RA and went to my PCP. After talking to her she said she was going to run lab tests to rule out RA, Lyme, Lupus and such. She said it def was not FM since that is a "made up" condition drs use for hypochondriacs when they can't figure out what's wrong with someone. Well after all that lab test showed I had Lyme disease and was started on 6weeks of ABT tx. And started to feel somewhat better. Never my old 100 percent self. So all year every so often these symptoms come back. Progressively getting worse and worse. Now it's back to the way it was or even worse. I'm so frustrated, and am not going back to my dr since she doesn't believe this syndrome exists when it's honestly what I think I have. I think the Lyme jumped started it. I know this is a long rant, not really even a question. But i need to find a new PCP and possibly a rheumatologist. It s struggle to work and live my everyday life. I'm seriously at my wits end!
Im so sorry to read all these posts and see what pain and suffering people live with daily but it's a comfort to know I'm not alone.

Thanks for the ear
Ava
Posted 5/3/2012 12:30 AM (GMT 0)
Ewwwwww, I hate to hear somebody say their doc "doesn't believe in fibro".  It's real all right!!!!

Good for you for finding, or looking for a new doc!  A rhumey can be a great help with Lyme, tests for ruling out any other issue, and pain control. One thing about Lyme, it's hard, really hard to get rid of.  You may have to be on antibiotics for a looooooong time. 

I'm sure you will get more replies, check out Fibro 101 at the top of the page.  Oh, Welcome!!!!

Posted 5/3/2012 12:36 AM (GMT 0)
Thanks for the reply spookiesmom! I did check out some of the resources and I did see a lot of research on chronic Lyme. Again something my old md did not believe in.... Again another reason for the switch. I'm just wondering and kinda hoping for a diagnosis of something. At least I can start some sort of treatment.....I'm taking flexaril and Tylenol with codeine at present. It's been in my medicine cabinet for like two years from an old sacro-iliac strain. And I know it's probably lost all it's potency by now. But again. I'm a nurse and we self diagnose and self medicate. But I'm trying not to take it more then once a day.
Posted 5/3/2012 4:55 PM (GMT 0)
And there have been lots of reputable studies on Fibro too. Check out Mayo, or WebMd.

Have you ever had your Vit D level checked? A lot of us are low in that. The low end of normal is 40, I was 17. I do 2000 u a day, could be more, but that amount has made a huge difference for me. And some do other supplements as well.

HaHa, I know what you mean about being a nurse and self dx-ing. My SIL graduated LPN last week. Now Mr. Know it All is ready to fix the whole family. OOOOOOOOOOkkkkaaaayyyyyy.

As for rx meds, again, that is a trial and another trial. It gets expensive and frustrating. There isn't a magic pill, one size fits all here. Some have great results with this, others can't touch the stuff.

Good luck
Posted 5/3/2012 5:56 PM (GMT 0)
I use to take magnesium, vitamin d, vitamin b-12, flax seed oil caps. I stopped for a while but just started taking them again. I started because when I tested positive for Lyme my d levels were soooo low as where my vitamin b. flax seed oil caps I was told to take by my eye dr because I have chronic dry eye and as per her I am also developing a cataract in my left eye due to use of anti depressants as a teenager for major depression. A lot of these vitamins give me heartburn though.... :-/
Posted 5/3/2012 9:26 PM (GMT 0)
I'm sorry you are having such a hard time getting a diagnosis. It stinks being ill and not knowing the cause. I also applaud you for looking for a new doctor; your old PCP sounds like she needs to update her education. mad

Many of us have had to go through several doctors and/or tests before we were diagnosed with fibro. My PCP never mentioned it, but after I did some research (trying to figure out what the heck was wrong with me), I went to see a Rheumatologist myself. I've had lots of testing done, and I have actually been diagnosed with fibro by 3 different Rheumies (one moved, and the other was too far away, and the drive got to be too much). I just don't think that all three would have come to the same conclusion if this were a "made up illness."

It sometimes takes persistence when you have an invisible illness (as I'm sure you know), and there are doctors out there who will make you feel crazy. If you do suspect fibro, you can call doctors' offices and ask if they treat fibro. If they have experience with it, I think you are much more likely to get an accurate diagnosis whether it is fibro, or lyme, or something else.

I hope you get some relief soon.

Hugs - Austen
Posted 5/3/2012 9:40 PM (GMT 0)
Thanks Austen!
Yea I actually loved this md before I got sick last year. She was a nurse first so she had a lot of the whole person approach like most nurses do. (care for the person's medical, psychosocial and spiritual needs). Which is why I was so surprised to hear her say it's amade up ilness. She did diagnose the Lyme so I am grateful for that but..... Anyway. I feel as though there is a WAR going on in my body, it's hostal territory and Im in desperate need for the UN to send in the peace negotiators. In fly the Tylenol #3. The only ones getting through to the "unwilling to negotiate taking my body hostage" whatever this illness is. Im still unclear as to why the opponents are so angry. Well for now the peace talks resume and my recliner calls to me as I cant sleepin a bed due to extreme pain and stiffness. Thanks for all the support it truly means a lot.
Gentle hugs to all
Ava
And for the record I take all my patients complaints of pain extremely serious. And if nothing else I will take this experience and only become a stronger louder more of a squeaky wheel advocate for my patients!!!! The dr and nurses who don't i apologize to each and everyone who has been dismissed, labeled drug seeking, or/and "crazy". It angers me to know the ignorance out there!

Post Edited (AvaMayva) : 5/3/2012 3:43:03 PM (GMT-6)

Posted 5/3/2012 10:28 PM (GMT 0)
AvaMayva,

Welcome to the fibromyalgia forum. I am sorry that you feel you may have fibromyalgia. It is no fun, I do know that. Do check out the thread titled "fibro 101". It is the second thread on the forum.

I understand that lyme and fibro have a lot of the same symptoms. Though I don't know a lot about Lymes. But I know enough to know you are in a lot of pain and I hope that you can get this sorted out so that you can get some help.

I also understand that it is a shame, though it is happening, but with so much abuse of prescription medications, the doctor's often wonder if people are just drug seeking, especially since there are very few tests that can diagnose fibromyalgia. I am sure you have even seen it before, being a nurse. It is too bad. For people who need help, often cant get it. It seems a lot of doctors are hesitant to prescribe medications for pain. But I guess I really don't have to tell you that.

I have a fabulous nurse who is wonderful to me. I have had some that weren't. But I feel so fortunate to have a nurse that listens and cares.

I sure do hope that you feel better soon. I am glad that you have joined us. The more the merrier, I say...

Hugs, Karen
Posted 8/16/2012 6:39 AM (GMT 0)
avamayva- I couldn't help but seeing your post, I'm constantly struggling between do I also have fibro? I was diagnosed w/lyme one year ago, but diagnosed w/fibro 9 yrs ago. 9yrs i was tested for lyme and came back negative, however one year ago came back positive following a bulls eye rash, so i've been on aggressive treatment for about 9 months now. Your description of your sypmtoms caught my eye because yours started out the same as mine did, flu like and the very stiff arms, widespread body stiffness and pain, if you bend your writsts forward pain and stiffness. chronic burning headaches in forhead and neck.

But if you were diagnosed w/lyme, why don't you think it's lyme? you mentioned you were only on 6 weeks of treatment? this is not near enough. I think you need to be seeing an llmd. My life is a living hell, as i'm on the verge of suicide 10 yrs of my life lost, but if I had been diagnosed w/lyme to begin with, I would have just gone forward with that.

I'm NOT saying to anyone that fibro isn't real. Believe me , I have the tenderpoints and all, and very similar syptoms, that's why mine almost definitely was misdiagnosed for so many years, but the whole time before I was diagnosed w/lyme, I always tested positive for the chronic viral infections, pneumonias, low thyroid, extremely low cd57, a level of 16, now a 2. so it makes sense to me it probably was lyme all along, but if I all my syptoms always matched that of fibro, now for the past year more lyme.

Either way I think the root cause of both of these illnesses is infectious disease both viral and bacterial, so I think our treatments should be focused on treating these. I don't know I could be wrong.
Posted 8/16/2012 1:37 PM (GMT 0)
Hi, Ava, and welcome!  Before I begin, Seniubr, you can have both Lyme and fibro together.  I don't think Ava is denying that she has Lyme at all.

 

Ava, I'm so glad you are changing doctors.  I'm sure you know you want a doctor thats abreast of everything new going on in medicine.  Obviously your doctor isn't.  Fibromyalgia is recognized by the American Medical Association, the Americal College of Rheumatology, the National Institutes of Health and the World Health Organization...just to name a few.  No, we are no hypochondriacs nor is this all in our heads.  I see a board certified Internist and also a rheumatologist that help with fibro and all my other ailments.  Again, make sure any doctor you see treats fibro patients before you make your appointment.  There are still doctors out there in the Dark Ages when it comes to fibro...and  yours is one of them.

 

I am not a doctor but your symtoms can be those of fibro too.  I personally use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, vitamin D3 supplements, and an alternative pain product called Curamin.  I do take one prescription med for fibro and ankylosing spondylitis call Robaxin...it's a muscle relaxer and this has helped me significantly.  You get plenty of exercise at your job so that is good.  Try to pace yourself as much as you can, also.  This really does help a lot. 

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn even more there.  There are links about malic acid/magnesium supplements and vitamin D3 supplement and how they work in the body.  Many with fibro are deficient in these vitamins.  Also, a link I think  you would be interested in is called Doctors Respond to New York Times Article.  In it learned doctors respond to an article that had been written that said what your doctor said!  Boy, did these learned doctors cut that notion off at the knees!  wink

 

You definitely are not alone.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from  you soon.

 

Sherrine

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