Back from Doctor's Appointment and I am in an FMS Flare didn't..

Discussion in 'Fibromyalgia Main Forum' started by kjfms, Nov 16, 2006.

  1. kjfms

    kjfms Member

    even know it!!

    Well thank goodness I have a great and I do mean GREAT physician -- she is a DO.

    She told me I was in an FMS flare and I didn't ever know it -- yes I know it sounds odd. I have this DD since 1998 so you'd think I would know right? Wrong...

    I have been feeling really bad -- fatigued more that usual, having unusual pain (upper arms) hips, not just the usual FMS pain that I normally have if that makes any sense.

    This has been deeper what I referred to as bone pain or so I thought -- a few weeks ago. Wrong...

    Pitting edema lower extremities, total body heaviness, hair loss, literally dragging myself to work and crashing as soon as got home.

    I was pretty sure that most of this was thyroid related and I was right in a round about way.

    Blood pressure is up as well -- from the pain.

    She [my physician] said that I am in a major flare that is causing stress on my thyroid and making me have more hypothyroid symptoms -- as if the pituitary tumor sending it into hyper mode about 5-6 weeks ago was enough...aaarrrggghhh

    So after years of knowing exactly what was always going on with my body -- I am basically back to where I started in 1998 (I guess) knowing nothing about what is going on with my body.

    I am very, very lucky that I have a physician who is experienced with FMS cases -- and I know it.

    I am very sorry for those who are still having problems with physicians -- I suggest a DO because they're great :) IMHO.

    I still feel like crap but at least she acknowledges it. She is doubling my Topamax (migraines are getting worse).

    She is also increasing my Levoxyl for my thyroid in hopes this will help with the thyroid symptoms.

    Gave me a shot of Toradol with Phenergan for pain today -- it helped some.

    At least I don't have to work until Tuesday so I can rest a little :)

    Thanks for letting me share,

    Karen :)
  2. CanBrit

    CanBrit Member

    Such excitement from being in a flare!!!

    I do know what you mean though. In the past few years with FM, I'm starting to realize that there isn't nothing constant with this condition.

    I have pains all over the place, some all the time, some from time to time. Swelling on and off. It goes so far beyond tenderpoints it's not funny. Add all the other pre-existing conditions and it's an absolute party in my body.

    I'm glad you have a good physician. Mine has come a long way since I was diagnosed. We've both been learning together.

    Get a good rest.....

    All the best,

  3. kjfms

    kjfms Member

    Excitement no that is never a word I use with FMS -- more like complete and utter surprise I would say :)

    I just found it shocking after having FMS for so long -- that I failed to recognise a flare...

    I have an all over pain too but this pain has been different -- sorry it is hard to explain.

    The only thing consistent with FMS is the inconsistency isn't it?

    Sorry you have FMS with preexisting conditions and yes it is so much more than the tender points.

    The funny thing is I had FMS before I had thyroid disease.

    I am glad your physician is improving -- that is fantastic.

    Thanks for reading and responding.

    Take care,

    Karen :)
  4. kjfms

    kjfms Member

    to get these posts from left field lately...LOL

    It seems like every time I post anything anymore I get some off the wall.

    jaminhealth -- to the best of my knowledge I have never corresponded with you and you have no idea what medications or supplements I do or do not take and yet you proceed to give a sermon and think you can sell me grape seed extract?

    Well -- I not buying :)

    I am very glad you have found something that works for you but we are ALL DIFFERENT and what works for some does not work for every one.

    This is NOT a ONE SIZE FITS ALL disease. If it were -- things would be as easy as you make them out to be.

    I have read some of you other posts and it is great that you are doing so well but please remember not everyone here is doing as well as you and I am not speaking of myself.

    While one treatment may be a "miracle" for them for others it is nothing more than a waste of time and money -- that simple.

    We really do not need sermons on what supplements we should be taking or not.

    This is a very supportive group if you do a little reading you may see that -- no offence meant :) just a thought.

    I do not know the reason for my FMS it just happened -- the cause is unknown.

    The treatment is ongoing and is my disease. I do the best I can do -- I go to work and try to live as normal a life as possible.

    Thank you,

    [This Message was Edited on 12/01/2006]
  5. kjfms

    kjfms Member

    Thank you so much a little empathy goes a long way doesn't it :)

    Yeah working makes it worse and having to sit in one position for so long doesn't help but doing medical transcription I am stuck for now -- need the money.

    My physician said most of it is probably weather related she said some of her other FMS patients had been calling in for help.

    I know my post sound odd but this pain it just so different from what I have been used to so I guess the FMS is changing if that is possible or something is going on perhaps with the pituitary tumor.

    Whatever it is it's very painful and different.

    Thank you so much,

    Karen :)
  6. I miss my Topamax...but developed horrible side effects---after being on it for nearly a year & a half! (Go figure!) I'd have weeks-2months at a time, of almost COMPLETE anorexia...eating maybe a few crackers on a tuesday, and say....half-full rice cake on like a friday or saturday, and that'd be it for a week! ACK!

    Then, (I've lost hair for over 3 yrs now, "dx male pattern baldness") I have hypothyroidism, but, doc hasn't put me back on Armour! (been on & off it twice...???) so, I blamed it on that--but then I read where others were losing tons of hair, on Topamax....just usually within first few months...I was losing sooo much more...

    I quit Topamax, went on Gabitril, hair loss slowed down, hubby even notice (i.e. shower drain)..but now it appears to be almost just as bad again....I take biotin...I just have big time nutrition problems...and don't seem to get *anything* from oral supplements/vitamins but tummy probs,

    My doc is a DO also, (primary) but I generally see my integrative med doc, he's still young, new, ready to try all kinds of things....still dedicated to helping me..and he's 5 blocks away, versus 18 miles...

    Anyways, hope you do fine on the doubled topamax, and it helps your migraines.....I can tell you once I quit my 300mgs, my appetite seems worse* than it used to be, but, other days, nausea prevents overeating..

    Best of luck to you.

    People--please, let's not be telling people "Get on it, and STAY ON IT!" we're not children, that need to be bossed into taking our Flintstone vitamin everyday. As Karen said, you don't know her medications, etc that she's on, or other health conditions, nor* whether she's on any OTHER anti-oxidant---there ARE tons--as I'm sure you know. Let's treat each other like competent, capable, adults.

    You most certainly wouldn't be telling her to take *grapefruit juice!* It's contraindicated in most if not ALL anti-convulsants, and many many other medications...

    Whether trying to help, or not, please watch the 'tone' of a post (i.e. that last sentence, of yours) and know that *information, well meaning suggestions, etc are always appreciated....being treated like idiots, talked to like children, or having someone *insist* in capital letters, to get on something and stay on not appropriate, for one thing, nor necessary.

    Thanks, & wish EVERYONE the best of health possible.

    Again I hope you feel better soon, and that the topamax helps with migraines, Karen..


    Laura M.
  7. kjfms

    kjfms Member

    Thank you so much for the well wishes I really appreciate them.

    I am sorry you can not take Topamax anymore -- that is one drug that really does help decrease my migraines.

    I did have a two year remission from FMS a few years ago and I think it was due to Topamax but I have no proof other than I was on a very high per my neurologist for the daily migraines during that period all FMS symptoms resolved -- so I credit the Topamax :)

    Yes I do know what you mean with the anorexia I lost 70 pounds during that time but I needed to -- I would make myself eat a few spoons of veggies...LOL

    For me Topamax changes the way food tastes and I haven't drank any soda in years...yuck -- which is a good thing I never drank a lot any way and always watered it down because of kidney problems.

    I did not get anorexia as bad as you though -- I did eat daily. You poor thing that is not enough for a bird is it?

    Are you taking anything for you thyroid? If not you might want to see another endocrinologist. Left untreated as I am sure you know hypothyroidism can lead to heart problems and vision and hearing loss.

    Sorry you are loosing so much hair -- you are still loosing it and not taking Topamax? Are they sure it was the Topamax?
    I ask because it is a classic sign of hypothyroidism as I am sure you already know.

    I never lost hair with Topamax only when my thyroid is off...sigh

    You have to forgive me I did not look up Gabitril so I do not know what it is -- sorry. Tell me more.

    Oh Laura bless your heart I really hope you can find some answers.

    I know how upsetting it can to have you hair falling out. Do you have any endocrinologist close by?

    You are so sweet for taking time and wishing me well with my little problems and I really thank you for doing that.

    I hope you feel better soon and find some answers too.

    I am pretty sure I'll do fine on Topamax 100 mg b.i.d.

    The neurologist I used to see when I had insurance had me taking 3 tablets of 200 mg t.i.d. that is how bad my migraines got two years ago.

    I am scared to death I am going to get that bad again. because they have been back daily for a while and are increase in the severity.

    I do not want to go back on that high of a dose because I have a terrible feeling that the neurologist was using me as a Guinea Pig. I have not been able to find anything on that dosage anywhere and I have been search for a few years now...aarrghh

    Laura sorry for writing a book -- hehe

    Oh and you are right I am on at least four medications which grapefruit juice is a big no-no so thank you for tossing that bit of info in as well.

    I couldn't have said it better myself Laura you are a dear for saying it :)

    So glad I am not nuts -- I thought maybe I was being overly sensitive...

    I for one just hate when people try to cram thing down my throat don't you -- silly me yeah I guess you do too...LOL

    I hope you have a great day and remember to take care of you.

    (((hugs back))),

    Karen :)
  8. kjfms

    kjfms Member

    Oh yeah I have a pituitary tumor and still can't win the lottery.

    That is an interesting piece of trivia. I am still learning so much when it comes to the pituitary the more I learn the less I know.

    Wonder why the pituitary stops in those cases in the ICU? Interesting...

    Why did she want to "get rid of you" what did you do...LOL Just kidding...LOL

    I take Levoxyl but I would like to be back on Synthroid I think. Does levothyroxin help you?

    Several people on here have PTs wakemeup has one and darude too and a few others that I can't remember their names.

    Well I work out of necessity believe me and I enjoy it -- for the most part. I really want to go back full time I need the insurance.

    We are having just too hard a time financially with me working part. I am so worried about LIL and seeing him so stressed out about our financial is not good for me so I think I really do better when working full time -- if that makes sense. Less stress you know what I mean?

    You better hold on to that man -- he sounds like a keeper...

    Hayley I didn't think anyone was as bad as me with trivia but you are pretty close...LOL

    You take care of you too,

    Karen :)
    [This Message was Edited on 11/17/2006]
  9. NyroFan

    NyroFan New Member


    I am so sorry you are in a flare, but thank goodness your doc took care of it.

    Now you rest, rest, rest. It is good to know you do not have to go to work until Tuesday.

  10. kjfms

    kjfms Member

    Thank you so much for the good wishes. I am in pain today but I did sleep very well last night.

    Thanks to the shot of Phenergan with the Toradol the Toradol really doesn't help a whole lot but the Phenergan always knocks me out.

    I hope you are doing OK :)

    I am so glad that I finished my work and do not have to return until Tuesday this way I do not miss any so really it worked out pretty good.

    Yes I am very lucky to have a good physician. She is a god send.

    Take care,

    Karen :)

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