Newly Diagnosed, frustrated

Discussion in 'Fibromyalgia Main Forum' started by DonnaTerr, Aug 9, 2005.

  1. DonnaTerr

    DonnaTerr New Member

    Im glad to have found this site. I have been "sick" for about 9 months now. Started just feeling tired, than it became complete exhaustion. Muscles aches and pains that were mild became overwhelming , burning,throbbing and annoying. Restless legs at night. Headaches, I've asked my boyfriend to just knock me out when I get them. My right eye twitches constantly, left side of my face "tingles"? Left ankle seems to have chronic tendonitis with no injury. Right Hip, cant even lay on it anymore. I feel like my whole body is falling apart. I am in the medical field and its very hard for me to be told you had a condition that basically, we dont know what it is or why it is, it just is. I have all the positive trigger points, all the lovely signs and symptoms. I have a very supportive bf and family. I Have such guilt that I can no longer function on the level I did before with my kids. I am completely frustrated with the constant fatigue. I want to feel like the old me again. But I have a feeling that old me will only come back in spurts. I Guess Im just venting and wanting to hear from other people with FMS that yes, they too feel this way.

  2. lvjesus

    lvjesus Member

    I do think the fatigue is the worst, at least it is for me. I can deal with most of the pain I have, but sitting here at my desk trying to keep my head off of it is the worst.

    I believe that good sleep is the answer to the fatigue. I am on 25mg of elavil (generic) for sleep and it is supposed to help with pain also. I don't know if it does but it helps with sleep. I got used to that dose and added melatonin or valerian. I also take ZMA, which is sold here and is magnesium and some other things. It is supposed to help you relax so that you can sleep.

    I got to a point that the flourescent lights were driving me insane (could not do the grocery store without a visor or hat and glasses - stupid looking, but who cares?) I researched it here on the board and went to my doc for Klonopin that is recommended here alot for that and anxiety and other things. It is a seizure med. Oh, you probably know that!

    There were addiciton questions from my docs that I won't go into here, but I got .5mg to take at night on a trial basis. The results for me were fantastic. The lights don't bother me anymore, I have more energy (most of the time) and am not sleepy during the day, except occasionally.

    I am not advocating that you jump on this regimin, only telling you what helped me. I AM advising that you start researching for yourself, here is a great spot for that, and find a doc that can treat you for it.

    Good luck and God Bless,
    Sonya
  3. kalley167

    kalley167 New Member

    I hate the fact that I can't do what it seems I could do 2 years ago. I hate that I have to sit down more often than most at my age. That I get a limp because my hips ache after walking awhile. That it takes me 3 minutes or more to stand after sitting to long. That I feel exhausted ALL the time. That I don't sleep right. I long for a good nights restful sleep !

    I still work full time and try to exercise (which has helped), now I consider my FMS/CFS to be mild but there is always something hurting somewhere. I hate the fact that people don't believe that I am sick since I don't "look" sick. I gave up telling people, I just tell them if they ask what is wrong with me that I am just tired.
    So just to let you know you ARE definitly Not Alone.
    This is a great site with many people who understand and know what you are dealing with.

  4. DonnaTerr

    DonnaTerr New Member

    Hi Sonya,
    Thanks for the welcome. Yup Klonopin is used alot for anti anxiety and as anti seizure. My doc prescribed me Ambien which I cant take . I cant take any type of med that will knock me out at night. My 9 yr old son has night terrors and has tried multiple times to get out of the house when hes having them. So I cant be on any kind of sedative or such because Im the only one there at night. I too have that light sensitivity. I have actually adjusted the lighting on my tv, those weird looking blue headlights alot of new cars have, is blinding to me. Instant headache. Grocery stores, I also agree, I can only stay in them so long. Its like a sensory overload. Im glad you have found some type of regimen that works for you. I hope you are feeling well. Thanks, Donna
  5. icare

    icare New Member

    Donna welcome to the forum. you are certainly not alone and,we know exactly what you are going through.." Really"
    That was my favorite word...Frustrated" Drs kept saying you might be depressed, and i would say i am more Frustrated with the health care system and some of the Drs that think you look fine.

    I seen over 30 drs and took me 6 years to get a diagnoses..Very frustrated>

    You will need to take things in stride...Take care of the pain..Whatever medication you take..keep a record of it..and if it doesnt help, note why you stopped taking it.
    This will help you in the future.

    There are not too many answers out there for this illness and it surprises me, how little Drs know.
    You should have complete blood work done if you havent..Being in the medical field you know what i am saying..Thyroid ect.

    Most important is your mental state.Not too hard to feel depressed and having thoughts of Eg!! how did i get into this mess..try not too look back try too think ahead.
    Dont be hard on yourself.

    What help me most is not dwelling on the things i cannot do...But what i can still do. You really need to do the things that make you happy, people need something to look forward too.
    When i left my Job i was as low as a person could get..I spent 2 1/2 yrs pretty well bed ridden.
    I have had CFS/FM for 9 yrs now and this may seem a bit crazy, but in my case i have excepted the weakness and general feeling of being ill, but i did get somewhat better.

    I have good days but its only for a few yrs and then i need to rest.
    Support is very important, and i did go to a support group for awhile.
    A supportive family that you have is very important.

    Dont push yourself, do only what you feel like doing., and dont feel guilty about it. Some People do get better as time goes by.

    Wish you all the best...
    Rick





    [This Message was Edited on 08/09/2005]
  6. lvjesus

    lvjesus Member

    you might be able to get something that does not knock you out. I am definitely not knocked out so that I can't be waked up. Have you got one of those alarms on the door that goes off if you try to open it? I mean one of those motion sensor ones that hang from the doorknob.

    You have to be your own advocate. I honestly believe that. You will get some good advice here, trust me. I would advise perhaps posting a topic asking for help with whatever symptom you need to address so that more people who might have information will notice it. For example, if you want help with the fatigue, use a title like, Anyone have any advise for help with fatigue? or something like that.

    Even a doc that knows about fibro won't know all the quirky symptoms that we only tell each other. My PCP gave me 2 months of the Klonopin (generic) but said he would not give it to me long term because it is addictive. He did refer me to a rheumatologist who also said it is addictive but agreed to give me 3 more months worth at the same dose. He was more comfortable about giving it because of the low dose once a day and the fact that the very next day, I was so much better.

    That next Saturday my husband and I left the house at noon and went to the go cart track, Sam's club, the grocery store, and out to dinner. We got home at 8 and I was still not tired. Before this, it was dinner and then home. And NO grocery store or Sam's for me!

    But the reason I say reseach for yourself is that this rheumy says he has 30 FM patients and when I mentioned the lights, he said he had never heard of that! What?? He did not say it mean, just in passing.

    I was to the points that the lights at work were making me miserable and I was just sitting here longing for the end of the day. I had to do something.

    Sonya
  7. mhammie

    mhammie New Member

    Donna,

    We have all been there and some of us still are at the place your currently at with the frustration. Frustration with docs, friends, family, and sometimes with yourself. What your going thru is typical.

    I totally agree to look at what you can do and not to dwell on what you can't do.

    Learning to pace yourself, so your not so exhausted, is something very hard to learn. I still don't have it down.

    Icare mentioned keeping records of your pain, and medications.

    Personally I have gone to the point of getting all of my medical records for the last 6 yrs. I just started doing that late last year. It's amazing how much they have wrong.

    It's also very important to get copies of your labs. That way if you have to see other doctors, it's sometimes easier to make copies of those instead waiting for your PCP to send those. I have found after receiving my medical reocrds that most of the lab results aren't there. So now when I go to the doctor, I ask them to send me the actual results. Don't just let them tell you on the phone everything came back fine, only to find out later that something might have needed further investigation.

    It's good that you have a supportive family. That will make a great deal of difference on your health.

    For me the things that truly get me thru the rough times, is having something to look forward to. That may mean lunch with a friend, reading a book that you never had time to read before, taking a bubblebath. Maybe shopping at store that isn't a grocery store of course. If you have crafts & hobbies, just to devote 10 minutes a day to them.

    Now the outings with friends or family can come to be a challenge. For me I don't know from 1 minute to the next if I can keep my promise to have lunch with a friend. Thankfully the one person I hang out with most is very understanding if I have to cancel. She will many times also ask if she can pick me up to go to lunch, if I'm too tired to drive.

    We all know this isn't the best way to meet other people. Many of us are just blessed to know this board is here to bounce off our frustrations, and to learn about our illnesses as much as we can. We also learn what works for some, doesn't work for others.

    This is a great place to get support from others that truly have walked in your shoes.

    You will always be welcome no matter what kind of day your having.

    Mhammie
  8. lovethesun

    lovethesun New Member

    can't answer because I'm feeling too emotional today.Will try tommorow .