Just Newly Diagnosed...lots of questions

Discussion in 'Fibromyalgia Main Forum' started by chickabee, Nov 30, 2005.

  1. chickabee

    chickabee New Member

    Just diagnosed with fm and polymyalgia about 5 months ago. Also have had Arthritis for a long time. I hear where people go into remission. How long does these remissions last? I have heard mild exercise is supposed to help, different types of vitamins also. Does everybody else have days where it hurts so bad you just can't move? Or is it me? I don't baby myself, and am learning not to overdo myself. I overdid this past week-end and paying the price for it yet. Does fm make you get out of breath just climbing stairs? Or is that something new I have to think about... :( Boy, I sure have a lot to learn about this, I keep reading about it to try and understand it more. Nancy
    [This Message was Edited on 12/01/2005]
  2. 1horse

    1horse New Member

    Man there is so much to learn and read. people on this board are quite knowledgeable. I am newely diagnosied with fm.. I find I have episodes (flares) meaning good days and bad days. pain can be horrible or mild. exercise helps, stretching helps q10, and vit.help . sometimes I have to takepain meds other times aleave helps sort of..everyone is different and sometimes i am so weak I cant seem to function at all. this probably doesnt help at all,but we are there for you.. ~hugs~ Peggy
  3. chickabee

    chickabee New Member

    Thanks Peggy, it's nice to know there are good people on here that can help learn more about this. I am just trying the stretches and mild exercises. I was at a mild bout until Sun. I just overdid myself and wow, I sure learned a lesson very fast. I still hurt all over, but it isn't as bad as it was before. I have been reading these message boards and so many people know so very much about fm. Thanks for any information. Nancy
  4. Angel6801

    Angel6801 New Member

    Sorry that you have to go through the stage. Everyone is different with FM. For me, my symptoms are mild, compare to other people. Yes, I do get out of breath when I climbed on stairs. There are times when I do not want to get up due to really weak and the sore, achy muscles around me. It can be really depressing sometimes. There are days that I felt OKAY and I enjoyed it at each moment until I gets sick all over again.

    Just want to say... Welcome to our board and hope that you will find the anwsers to your questions. I just dx with FM last summer and is not on any treatments yet, just beta block medication for my rapid heartbeat and feel like pass out.

    Take care.
  5. lovethesun

    lovethesun New Member

    FMS runs the range in different people from mild pain to Bedridden and not able to walk.Sometimes people have aother things with it and it's hard to discern what pain is from what.Welcome to the board.Linda
  6. chickabee

    chickabee New Member

    Thanks so much for the welcomes to the board and your replys.It sure helps knowing there are so many nice people to help out and understand .I am looking forward to knowing you all a little better. Hopefully I will be able to lend a helping hand to someone who is reaching out also. Nancy
  7. tngirl

    tngirl New Member

    Welcome, I'm sorry your are having these problems. I don't know much about polymyalgia, but I do have fibromyalgia and arthrits (and a few other things!)

    Sometimes I have to make myself exercise, but I have found it definitely helps me. I had to start very slowly and I try to be careful not to overdo. Yes, I have days when it hurts more than others, it also varies in strength during the day.

    I have found these things to help: heat, the hot tub makes me feel wonderful, its the best muscle relaxer!

    Gentle stretches and strengthening exercises help. Sometimes I wake up in pain that doesn't get any relief until I get up and do the stretches for my hips.

    Water exercise, I have a pool that helped a lot in the summer. I am going to start some water therapy soon since I miss it so much.

    I have had Physical therapy that helped, the used ultrasound, massage and taught me exercises.

    I have a TENS unit that helps with the pain. It has to be prescribed by a physician.

    I have a massage when I can afford it.

    For pain I take ultram or lorcet if I have to have it.
    The only supplements I take are magnesium, multi vitamin and fish oil capsules.
    [This Message was Edited on 12/01/2005]
  8. chickabee

    chickabee New Member

    Thanks guys for more info.. i have heard that calcium and magnesium is good..what about that? I do take Centrum vitamins. I also have a TENS unit for muscles spasms I have had in my neck for over 19 years. That does help the neck muscles a lot. Yes, the mornings are so bad for me. Takes me forever to get down the stairs. But I keep going slowly, move around hoping to loosen everything up. Sometimes it works, sometimes not. I've always had some sort of pain for many years with arthritis, but this fm is sure kicking my butt good!! Dr. had me on Vicodin ES for now, it just takes the tip of the edge of pain away. Don't really like how they make me feel. I see there is another Nancy so from now on I will just sign Nanc...that is what I usually go by anyway..lol Thanks to you all for being so helpful. Oh, I will do my profile too. I forgot all about it..duh :)
    [This Message was Edited on 12/01/2005]
  9. chickabee

    chickabee New Member

    good grief, i forgot already. Dr. said the polymyalgia attacks the extremities, the neck, the hand, and the feet. That's all I know about it except that it makes my feet feel like they have spikes sticking out of them . Hurts like the dickens to walk on them too. Nanc
  10. chickabee

    chickabee New Member

    Thank you,..didn't think there'd by lots of Nancy's here. I don't ever hear of anybody else around here by that name. I like Patricia Cornwell's other books better too. I really like Marino. When I first started reading her books, I always thought it would be awesome if Kay and Marino would get together. What a match that would make...lol. I think she should also still be out in the field work, Lucy is a big girl now,..she can do without her Aunt butting in.

    Where about's in the UP Is your family from? You know, as old or I should say "mature" as I am, I have never been over the bridge. Isn't that shameful? How do you put those little smileys in? I'll just click one and see what happens.
  11. JPach007

    JPach007 New Member

    Hi Nancy!
    Welcome. I'm in the same boat that you are..recently diagnosed, and lots of questions! Everyone on this board is wonderful and a big help.
    I did water pilates for awhile and then the pool heater broke and I broke out in hives so I stopped going...I started doing Gentle Yoga. I dont know the first thing about Yoga, but I have found it very helpful. Stretching, breathing, learning to relax. My muscles are extremely tight, so some stretches I cant even do, but it definately helps me. I even have bought a Yoga mat and dvd to do at home on the off days the gym doesnt offer classes.
    As for vitamins: I take Vitamin B-6, B-12 and vitamin c daily. I think they help too.
    Pain and sleep: I take a combination that works for me: Ambien with Mirapex and Elavil at 8 pm. Skelaxin for muscle relaxers as needed. Usually 1-2 per day.
    Hot baths help me in the mornings to be able to not be so stiff.
    I think I would say so much is trial and error. What works for one person may be totally different for another.
  12. Empower

    Empower New Member


    I have FMS and CFS and have not gone into remission, although I do have days that I am able to function better than others

    Mild exercise is supposed to help, although I can't handle it. Although I do notice if I lounge too much, then I REALLY become stiff and sore, so for me it is better to keep moving.

    My mom has polymyalgia and has days when she hurts all over and is very fatigued. She takes prednisone when this happens.

    One thing I have learned is to pace myself. I have learned to try to rest every day, whether I need it or not

    Good luck and stay connected to this message board. There is ALOT of good info here, and I think there are a couple of members that have polymyalgia
  13. CarolK

    CarolK New Member


    I also had Polymyalgia Rheumatica!! My biggest complaint with the PMR was that "geling" feeling in my joints...it felt like I had thick gel in each of my joints!! plus the fatigue and overall pain. I also had low grade temps with it and I had to wait for several seconds after rising from a sitting position before I could walk. It also made me feel flu-like much of the time.

    My doctor put me on Prednisone for about one year while she monitored my "sed rate" with monthly blood tests. When my SED rate dropped back to normal, I was finally able to s-l-o-w-l-y wean off the Prednisone... If you are currently taking a steriod like Prednisone, be very careful that you wean off of it slowly!! Oh, I have been free of PMR now... all my SED rate tests have come back normal... so there has been NO relapse of the disease!

    It was after the year+ bout with PMR that I was diagnosed with Fibromyalgia and Chronic Fatigue. I do not show a positive for Epstein Barr... but because of the deep fatigue I have experienced, the rheumatologist said I also had the CFS.

    This is a wonderful site Nancy... keep reading, keep studying, keep researching.... it all helps! This site has helped me keep my sanity in a world where there is so little understanding of this darn disease (dd). Hopefully you can find a doctor who is understanding and sympathetic to your health issues.... they are few and far between when it comes to FM and CFS!! Consider yourself blessed indeed if you have one of the good ones!!

    Also, make use of the library on this site... it has much to offer... and do word searches to find postings from the past that apply to your current questions.


  14. CarolK

    CarolK New Member

    Nancy... I'm bumping this to bring it back to the top. In case you didn't know, the term "bump or bumping" means to bring a subject up again ... bumping just puts it at the top of the list again.

    There is a whole list of abbreviations and explainations on this site in case you ever wonder what a particular phrase means.

    Blessings... CarolK
  15. PVLady

    PVLady New Member

    and welcome!!! Personally, I think there is something to the connection with "stealth (hidden) infections" and fibro.

    I suffered terribly for over 15 years to the point I was housebound. Today (age 54) I am much better and work outside the home every day. In fact, because of the years of illness and isolation, I refuse to stay in the house during the daytime at all, no matter what.

    There is a clinic called FFC - I believe it stands for Fibro and Fatigue Center - these are popping up all over the country. Many members here have gone and seem to be reporting good results - I am considering a visit. The founding doctor's office is about ten minutes from where I live.

    Yes, you will learn alot here, and make many new friends.

  16. chickabee

    chickabee New Member

    Wow, what a coincidence, I was born Jan. 28th 1944!! That's great. I have the joint thickening expecially in my fingers with the polymyalgia. Also my feet (mainly the toes) always have sharp shooting pains in them. Dr. usually gives me steroid shot and then the dose pack for 6 days. that helps the really bad pain but of course doesnt' take all the pain away. It just seems like it is constantly here.

    I've been reading so much about fm here and everybody has been so great with information and the pick me ups they've given me. Now I know I am not alone in this. It's hard to get friends around me to understand what the pain is really like. They jsut don't seem to understand , but some are now beginning to realise my limitations.

    Hey, Carol,....aren't us Aquarians just the funnest people???????????? LOL Years ago when I was a tad bit younger,..people said that Aquarians were dumb! NOT! :) I have a silly question.....how do I get the edit/delete thing in the left side to go away?????? Mine is the only one I see on here.... (Ok, you can stop giggling now.) :)
  17. chickabee

    chickabee New Member

    Thanks Nancy, I am feeling better today. Pain moved to a different area and is not as bad as it has been.

    So glad you explained about the edit/delete...i've been sitting here trying to find something that wwould make them go away..LOLOLOL. It's a ditzy day here for me today. I finally found out how to look at others profiles.
    Have only checked out a few today.

    I've always liked the houghton area. Ussed to go there a lot years ago.

  18. cczub

    cczub New Member

    I too am new to this. I have good days and bad days. I am still able to work a 40 hour week but if I push beyond my limits I pay the price dearly. Today started off as a not so bad day but has just fallen apart over the past few hours. It feels as if I've been worked over with a baseball bat!

    I've found in the past month is that I have to listen to myself. Your body knows it's limits and try not to push it past that. I usually don't listen and it costs me dearly.

    You've found a good group here that listens very well and has great advice.
  19. gvmeabrk

    gvmeabrk New Member

    The one thing that you will find out is like everyone else is saying there are going to be good and bad days.I think the best thing anyone can do is find a set routine and stick to it as much as possible.I have opted to stay away from drugs to treat it as I tried several things in the beginning but seemed to have more pronounced side affects than anything else. I did stick to doxepin to develope a better sleep pattern and I had very good success with that.On the days I wake up in alot of pain I take ibuprofen and it does take the bite out of the achiness for me.And if the first dose don't give me the affect I want I will take another dose never have to take more than that to get me through the day though.When I feel a severe headache coming on I pop the ibuprofen.My opinion is to try to keep working I stopped working when I was first diagnosed and it had a horrific price to pay.Light exercise is very good but for me weight lifting done more.The most important thing you can do is give time to yourself if your body is telling you to go lay down then do that.Most of the time for me if I just lay flat for awhile I feel more settled and less pain.Keep your muscles warm do not let yourself get to cold that is what pains me the most.On the flip side don't allow yourself to get to hot seems like I swell up quickly which in turn makes me ache more.Stress is a killer try to avoid as much of it as possible even if you feel like you are being selfish.No one more than you knows what your body is trying to tell you.
  20. mahx

    mahx New Member

    there is so much good info on this board i check it every day
    Also, if you feel like or need to talk with pple---the chat room has a great bunch of pple
    that is were i go for my daily dose of understanding
    also. alot of knowledge about illness,treatments,etc.