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  • is this Fibro? can anybody help with this?

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    Old 11-12-2003, 12:22 PM   #1
    TTeri
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    Unhappy is this Fibro? can anybody help with this?

    I have been experiencing sometimes severe pain in my joints with swelling and cracking/popping in my joints. neck,jaw,shoulders,elbows,wrists,hands,h ips,knees and ankles. Some joints are worse than others and some days are worse than others. This is accompanied with low back pain.The pain is worse upon waking in the AM,after a nap or staying in one position too long. Sleepin is very difficult.
    I have controlled hyperthyroidism(4yrs. now)soon to have radioactive iodine treatment. I didnt know i was not suppose to be on hyperthyroid meds this long. I have been very active most of my life. Im 39,female,non smoker,non drinker. I have been through the gammut with the ortho Dr. for back pain.All he could find was that i have normal degenerative bone disease normal little bulges of disks for my age A small annular tear but nothing to implicate surgery . Now to internal med.who is now sending me to a Reumatologist. I have had 1 or 2 tests done for some type of arthritis that came back neg.After reading through this board and searching the net for info im still confused.I have been on so many NSAIDs i forgot all the names .Im currently on Vioxx 50mg.once a day(i take 2 sometimes) with little/no relief. I have tried to see where i fit in the Arthritis dept. I have so many other symptoms but they seem to be thyroid related and are aggressively getting worse.
    Hair thinning/loss,muscles aches,headaches,and what seems to be a constant state of PMS.(lights,noise,irratated etc..etc..) All these things are alot worse when it actually is time for my monthly.
    The back pain is worse now.I have had.:steriod inj.,P.T.,bone scan,back brace,
    purchased $$$ worth of sleeping aids.
    My Bones even hurt

    My mother was diagnosed with Lupus this year but i have read this is controversial as far as hereditary. Does anyone have any suggestions? My appnt. is the 18 of this month (Nov.03) I dont know what to ask for or anything other than state what i've stated here. Thank you in advance for any help
    Teri

     
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    Old 11-13-2003, 11:54 AM   #2
    Wittesea
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    Your Rheumatologist is probably going to do tests to look for things like arthritis, lupus, and Connective Tissue diseases. There are a wide variety of connective tissue diseases and some of them can cause the joint problems that you are describing.

    I have "Undifferentiated Connective Tissue Disease" which just means that I have symptoms and test results that point towards some sort of CT (connective tissue) problem, but with out conclusive results that point to a particular CT.

    An example of a connective tissue is a tendon or ligament. The back pain and stiffness that you describe could maybe point towards a ligament problem (because of the popping/cracking). I have a ligament problem in my shoulder and it pops and cracks and swells and hurts a lot!!

    The rheumatologist will do loads of tests, and if they are all negative *and* you have the tender points of fibromyalgia, then you will probably get diagnosed with fibro...

    I wouldn't ask the rheumy for any particular tests, but make sure that he/she knows that there is a family history of lupus... I would also definately mention just how much pain that you are in on a daily basis.

    I always suggest to people who have pain that they keep a *pain diary*. It simple to keep track of the ammount of pain, type of pain, place of pain, and how having pain affects your daily life. It is more peoductive to be able to say to you doc "I can't even do laundry because it hurts to much" rather than just saying "it always hurts".

    Learning how to communticate your pain to your doctors will make it much easier for the doctors to understand the scope of your pain, therefore making it easier for them to treat your pain effectively.

    I hope that you are able to get some pain relief soon

    ~Wittesea

     
    Old 11-16-2003, 03:00 PM   #3
    TTeri
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    Wittesea,thank you for the reply it looks like this is going to be a long journey. I started the diary and a symptom chart. Thats a good idea thank you again Teri

     
    Old 11-16-2003, 09:28 PM   #4
    Wittesea
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    Teri,

    Your welcome.

    Yes, it probably will be a long journey for you until you reach a diagnosis, and then the journey will continue as you learn how to control and live with whatever you have.

    The whole process is daunting and can be frustrating and downright scary at times, but if you approach it in the right frame of mind, it will be easier.

    I had plenty of times during everything that I went through where I was ready to flip out, and times where I did flip out, (I have still a hole in my wall that I put there out of sheer frustration with the medical system)!!

    But if you try to "arm" yourself with information and support from other people at the beginning, it will be easier

    I hope that your journey towards diagnosis is a short and easy one, and I hope that you get some relief from your symptoms soon

    ~Wittesea

     
    Old 11-22-2003, 11:31 AM   #5
    TTeri
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    Angry Re: is this Fibro? can anybody help with this?

    Hi Wittesea, went to the Rhuem. (was late) so i dont think he exam was as thorough as it could have been, Any way Dr. didnt even finish the exam before stating that i deffinately have Fibro,but also have some sort of swelling accompianed with it. Ruled out RA and Lupus thank God above. I the meantime time i am fighting with my new Dr. over treament. I.M. keeps putting me off and and keeps saying lets wait till we get all the results in. Well yesterday I got P***ed off and call her nurse up and said "look I cant live like this just doing nothing and waiting month after month for her to feel comfortable enough to treat me". She kept trying to call me back,in the meantime i was in the ER all day yesterday with the headache from hell.I've had them before but never of this type (one sided). Needless to say i never was able to speak with the DR. and she wont talk with my husband.
    Can you give me a good start Med. that seems to work? I have had hydrocodone10mg x2 every 4hrs. doesnt seem to be working anymore or im just used to it. I dont want to keep going up and up and up I think i need to change.
    She(Dr.)said she wants to dicuss pain meds and sleep meds. NSAIDs dont work.
    She appears to be afraid of RXing anything,and doesnt seem to get it or litsen untill your jumping off the walls. I truly feel alone and out of place here with this problem.Teri

     
    Old 11-23-2003, 08:46 PM   #6
    Wittesea
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    Re: is this Fibro? can anybody help with this?

    Teri,

    I have had those headaches that affect just one side of my skull... they are the headaches from the devil!! When I get headaches like that, it is almost always a muscular headache (caused by a Trigger Point). The only thing that works to kill it is shots of Lidocaine in my scalp.

    I am sorry that you are having trouble with your doc. I have had some troubles like that before- so I know how frustrating it is. When I first got diagnosed, my doc started me on Hydrocodone, and it didn't work for me either. I had much better luck with Oxycodone (name brand Percocet).

    Is there any possibility that your Rheumatologist (that diagnosed the Fibro) will take over your treatment of it?

    I know that you said that the NSAID's don't work... have you tried them alone only? or together with the Hydrocodone? Maybe you need a combo of both since the doc sees some inflamation on top of the Fibro. Also, a lot of Fibro patients get results from muscle relaxers (like Flexeril or Valium).... and you mentioned something to help you sleep, most muscle relaxers have the side effect of making you tired, so that could help you sleep at the same time.

    I take my muscle relaxer every night before bed to help me sleep, and it helps to reduce my morning stiffness also.

    If you have an appointment with your regualr doc, you could talk to her, and explain that you are unhappy with the Hydrocodone.... Explain that you don't want more medication because you want to be able to take the lowest dose possible to lessen your pain... and that the Hydrocodone doesn't seem to help a whole lot.... you could ask her if there is a different med that might work better for you.

    That's kind of what I have done any time that I have thought that I needed a med change. I explain what isn't working and why it isn't working, and I ask if there is something that might work better, because I certainly don't want more of whatever isn't working. I never make a request for any particular medication so that I don't end up looking like some type of "drug seeker".

    If your doctor still seems unwilling to change anything, or help you to be in less pain then ask her why... if she doesn't have a good medical reason for not treating your pain, then you might want to look into finding a different doctor.... sometimes there are good reasons for waiting.

    I had to be med free for a little while while my doctor did a few more tests on me (salivary gland biopsy). If I had taken anything that reduced inflamation (like the Tylenol that is in Hydrocodone and Oxycodone) it would have messed with the results.

    Anyway... are you feeling mentally better now that you have a diagnosis? I know that I felt a mix of relief and disbelief when I was diagnosed. I was glad to finally have a reason for all of my pain and symptoms, but I was so unsure of what that meant for my future plans and my life.

    There are 2 really good books about Fibro that helped me to understand a lot more about it, and gave me a lot of good information about what I could do to make it better. They are both written by Devin Starlanyl, MD. She is a doctor that has Fibro. The green book is like a manual, and the purple one is a good resource for how to talk to doctors and other professionals about your fibro.

    If you can only get one, I would suggest the green one first. My husband read a lot of it with me, and he now understands a lot more about Fibro too. I have even had my doctors read pages

    I know that it is a real lonely feeling when you feel as if you are not being treated properly or understood properly by your docs... but hang in there because it will get better. If you can, try to bring your husband or anothet trusted friend or family member with you to your next appointment with your doctor. Just having someone there to hold your hand, and to agree with you when you are talking about being in pain can help the doctor to understand sometimes.

    My husband has come with me before, and when he explained to the doc how I have spent so much time in pain, and that he didn't want to see me like that anymore... well that I think helped the doc to understand just how much pain I was in, and how much I needed pain relief. Plus, since he has come with me my doctor will now speak to him on the phone if he calls her or if she calls me and I am not here.

    I really hope that you start to feel better soon. ((((hugs))))

    ~Liz

     
    Old 11-24-2003, 01:09 PM   #7
    babyboo099
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    Lightbulb Re: is this Fibro? can anybody help with this?

    I have had fibro for many years and have just developed even more fun?! symptoms. After doing a ton of research.....I am going to my doc and demanding a test for Lyme Disease...many people who have been diagnosed with fibro actually have Lyme Disease, so please do a search for lyme disease symptoms and compare your s/s with what you find...

    Good Luck

     
    Old 11-24-2003, 01:29 PM   #8
    Wittesea
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    Re: is this Fibro? can anybody help with this?

    In my experience-

    It is quite unusual for that to happen if your doctor followed the proper guidelines before diagnosing you with Fibro. To get a proper diagnosis of Fibro, your doctor checks for the presence of Tender Points.... People with Lyme disease only will not usually exibit Tender Points.

    There are a LOT of illnesses, conditions, diseases, that have overlapping symptoms.... and the Lyme and Fibro symptoms are very similar... but the absolute difference is always the Tender Points.

    Of course, it is entirely possible to have both fibro and Lyme at the same time

    ~Liz

     
    Old 11-27-2003, 08:51 PM   #9
    TTeri
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    Thumbs down Re: is this Fibro? can anybody help with this?

    I'm sure my Internal Med Dr. is good but not for me! She decided to put me on elavil for sleep and pain. However, even getting this far was a whirlwind.
    She lost track of who she was talking to, confused my thyroid meds for anti- depressants (three times) and then forgot what she put me on(twice). I had to call her back and AGAIN all this happened all over EEEEKKK! she was nice enough to apologize and admit to the confusion but this is enough for this girl to change Docs. Hopefully with more success in the conversations. In the meantime i have picked up every book this little town holds on Fibro/Chronic Fatigue. Holding on!!

     
    Old 11-28-2003, 04:32 AM   #10
    Bine
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    Re: is this Fibro? can anybody help with this?

    hehe, sounds like your doc has some firbor-fog problems of her own :-)
    Sabine

     
    Old 11-28-2003, 02:07 PM   #11
    TTeri
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    Re: is this Fibro? can anybody help with this?

    Well, I dont know a lot about this "Fibro Fog"or anything that is attributed to it ie; Sinus,IBS,eyes, etc etc...I will be the first to attest to Chronic Fatigue,Lack of Sleep,and the feeling of having been beatin up with a big bar of soap (blanket Party)all over my body. Then I also have some confusing and painful Joint Swelling. Its hard for me to attribute everything that happens to The Fibro Moment. MAYBE I'm wrong I dont know.I do have trouble with all those things but where does one draw the line between a diease and just simple "I ate too many beans"or (for me) "I am an airhead when its that time of the month"!
    I would love to think its all related to just one condition.Someones going to have to convince me and so far, It appears that a lot of Dr.s are still having a hard time catching the Fibro train.
    I do beleive it is as Im told Fibromyalgia but where does one draw the line and differentiate I really need more education on this to understand this.
    I never even knew how to say the name let alone what it was. So I Read, Read,and then Read some more. Teri

     
    Old 11-28-2003, 05:16 PM   #12
    babyboo099
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    Re: is this Fibro? can anybody help with this?

    Tteri...

    I know that people are saying the tender points are the difference between Lyme and Fibromyalgia & that is absolutely NOT true...fibro can be a manifestation of Lyme

    You can also test negative for Lyme for years and actually have it...No test is 100% accurate, most aren't even 30% accurate! Results also depend upon Dr. following test directions and which lab you have the test done at...

    Do a search for lyme disease, lymenet, etc... if nothing else but to give you another option on what could be causing all of these problems..

    Not trying to be hateful to anyone...just a little frustrated with the misinformation out there

     
    Old 11-30-2003, 11:55 PM   #13
    Wittesea
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    Re: is this Fibro? can anybody help with this?

    Teri,

    When I was newly diagnosed I also had a hard time trying to figure out which symptoms and problems were caused by the fibro, and which were caused by something else... I spent a lot of time at the doctors office in the beginning, because I would ask for an appointment anytime that I got a new symptom

    As more time passed and I got more used to living with Fibro, I started to be able to recognize the things that are Fibro related and the things that are not. It is really just a matter of getting used to how the fibro affects you and your body.

    Now that I have become more familiar with how my body reacts to certain things, I can usually tell the difference between a fibro symptom, and something else.

    It is really difficult to have to become so familiar with your own body... the whole 'self-analysis' thing gets tiring after a while, and it can make you feel a bit crazy sometimes But, it is something that most of us with Fibro just have to get used to so that we can figure out what things need to be avoided to prevent a flare, and what things we need to do that will make us feel better.

    You are right that reading and educating yourself will help a lot.... but you will also notice that as more time passes you will become even more familiar with yourself and your Fibro... because as great as any book is, Fibro itself is so individualized for each person.

    Anyway, I hope that you are doing well.


    ~Wittesea

    Last edited by Wittesea; 11-30-2003 at 11:56 PM. Reason: needed to fix a bad color :)

     
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