How bad are your symptoms?

Discussion in 'Fibromyalgia Main Forum' started by mrpain, May 17, 2006.

  1. mrpain

    mrpain New Member

    Let me explain why I'm asking.....I notice as I read thru everyone's post how different we all are. It ranges from some who travel all over the world and rides horses, to some who are in a wheelchair and using oxygen...

    My experience is somewhere in between but gradually getting worse. This has been going on for more than twenty years. Is it that some of you have gotten better over time that you are able to be so active, or is it that not everyone on here has fibromyalgia or cfs...or the likes of?

    Or maybe the active ones are only in the early stages of this disease.. Don't get me wrong, I'm definitely not disputing anybody's claim of being sick, I'm just trying to get a handle on what the future could be holding for me in that there might be hope of actually getting better without terrible set-backs.....

    Let me know how long you've been fighting this disease and how bad your symptoms get and how it has affected your lifestyle....Thanks.!

  2. mrpain

    mrpain New Member

    I had lot of sore throats when I was young so they took out my tonsils and adnois...
  3. Hope4Sofia

    Hope4Sofia New Member

    I think I'm somewhere in the middle.

    I can identify certain symptoms from childhood such as headaches, intense growing pains, and hypersensitivity to light and sounds.

    But, there was definitely the beginning to the more severe symptoms in 1990. But even then I didn't have the over-all FM pain. It was more the fatigue, intense occipital nerve headaches, and hypoglycemia.

    Most of my pain set in during my pregnancy 6 years ago. I never recovered from that and have slowly progressed since then. Over the past 2 years I have added chronic foot and hand pain, and over the past year have been experiencing something like costochondritis.

    I didn't get a diagnosis until Feb of this year so I have only just begun my research on managing and treating this illness. Honestly, I haven't found much relief yet. It has been discouraging.

    I am not very active any more. I couldn't imagine riding a horse! My activity level has gradually declined over the years. Only this year have I really felt that this illness was preventing me from even mild, normal activities like running to Target, etc.

    I think you should keep your hopes up. I'm trying to keep my courage. I just can't imagine that life won't improve.

    That's my experience.

    Blessings,

    Sofi
  4. erfula1

    erfula1 New Member

    But I had symptoms of fatigue and insomnia since I was 12. I deal with pain in some form everyday. Honestly all I really want to do is stay in the house and not do anything but I am only 32 and I have to live while I can. I hurt so bad sometimes that I just want to lay in bed and cry but I make myself do things so that I know that I am still alive and that I do have a life.

    I ride horses and I drive a truck for a living and in writing the things that I do it seems like a lot. But compared to the life I used to live I don't do anything. For instance I used to ride everyday and I could ride all day long. Now I ride 1-2 times a month and only for a few hours. I can't even do that right now cause I am still trying to heal my broken ribs from getting bucked off one.

    And driving a truck, thank God He put me in the job I am in now. Out of 7 months of driving I have taken at least 10 weeks off. That is the good thing about being an independant contractor. I can take the time off without losing my job. I have been out the last 3 weeks! The down side is I have no benefits, no insurance.

    I know that I won't be able to push myself like this much longer so I am trying to get as much in as I can while I can. I am gonna try to learn medical transcription so I'll have a job I can do at home and I'll still drive when I can.

    It isn't easy and I do get so sick of dealing with pain and getting no relief. I don't look forward to getting insurance and going to the Drs cause I've dealt with the stupidity of them. Not all are bad but the good ones are so hard to find.

    I have been at different levels with this illness. I was bedridden for over 6 months and on 12 different meds. I got so depressed all I wanted to do was sleep cause when I was asleep I wasn't in pain. I have suffered insomnia so bad that I didn't sleep for weeks at a time. I have to take 10 valerian root, 10 3mg melatonin and 2 nighttime tylenol to sleep or I don't sleep. I've been on this for the last year and it is the only thing that works and I was even on Kolonopin at one time and it didn't work for me.

    I think everyone is different. Everyone's tolerance to pain is different. I don't think there is anything wrong with staying home. I do think that everyone needs something in their life to do or they will become depressed and have a low self esteem. I have read posts here about people dealing with it. I don't want to deal with that yet although on some level I already feel less self worth than I did before my illness. I do try to focus on what I can still do instead of what I can't.

    Anyway, sorry so long. Hope this helps. this is just me.
  5. shorty2

    shorty2 New Member

    i am new to this board i to have fibro for at least 18 yr. i have got worse over the years i now have trouble with sore musles that drives me crazy i have gained alot of weight i am a hairdresser standing makes my leggs hurt all the time but i could a lot worse hugs shorty2
  6. TxSongBird

    TxSongBird New Member

    I have had this nasty disorder for over 10 years, but in the last two years I have felt myself slipping. My legs are my main issue and I sit all day long for my job and when I do get up to go back to the copier, see clients, I can hardly get my legs to go. My upper back is really painful on the tender points in the Trapezius muscles and have a Thera Cane to help me work those out. I feel like my arms and legs weigh tons and I swell alot. I recently went through a long list of lab work, CT Scans and X-rays to rule out Lupus, MS, Arthritis and any other illness. I have pitting Edema in my feet and sometimes just getting on a pair of shoes is a feat in itself.

    TxSongBird
  7. JewelRA

    JewelRA New Member

    I have had symptoms of FM for as long as I can remember such as insomnia, restless legs, unexplained aches and pains, but really only in the last year since experiencing sacral insufficiency fractures with excruciating pain and sleep deprivation have I gotten so bad.

    Now the fractures are healed (but still hurt a lot), but I have constant muscle stiffness and soreness, poor sleep, can't get comfortable anywhere, burning nerve pain, sciatica, foot and leg pain, pressure points, you name it. I am not extremely active, but I keep going for 2 reasons: 1) I have a six-year-old and a two-year-old that demand it 2) being still and doing nothing make me 1000% worse. I cannot sit or lay for extended periods of time. I have to keep moving or I can't move, if that makes any sense.
  8. thirkmom

    thirkmom New Member

    I feel that going to nursing school at the age of 39, working 2 part time jobs, being a wife and mother of 3 boys in their early teens, studying, and the regular stresses of every day life took me to the brink of FM. What pushed me over the edge was having a female surgery which had a 6 week recovery period and I had to be back in school after 2 weeks. After about a month of being back in class, my class mates were getting after me to just sit still. I knew I was extremely fatigued but when I really thought about it, the squirming was pain. The pain was usually tolerable unless I was under a lot of stress like "finals." I remember having to take a really important test and would study hard and feel good about things. I'd take the test and on the drive home would get a migraine. It got so I was having a migraine every Friday because that's when the tests were.

    Things went along pretty good and My Dr. at the time gave me Darvocet for pain which didn't even take the edge off of the pain but it was better than nothing. I graduated in 1995 with my RN degree and continued working at the nursing home I had been working the last year at as an LPN.

    As time went on, I continued to be in more and more pain. I would have to stand for hours passing out medications to my patients. Then the fluroscent light started to bother me with their flickering, the call lights, the phones, the interruptions, and my fibro-fog made charting difficult at best. I would have to stay 2 hours after my shift just to get the charting done. The 12 hr shifts which were usually 14 became harder and harder, getting up in the morning got worse, and problems at home with a son on drugs hit me really hard.

    I had a new Dr. by now and was on Lortab. Two years after the FM dx I was also dx with CFS. I pushed and pushed and was only able to work for 6 years. The very dream of becoming a nurse became my worst nightmare as my health began to spiral downward. One morning I could not get out of bed. My boss gave me 2 weeks of leave with pay because he didn't want to lose me. I went back to work and after 3 days crashed again. So my boss gave me a month off with pay. I tried to go back after that and just couldn't. I stared to pick up a shift here and there and finally I couldn't even do that. The loss of my nursing income was devastating. It was half of our income and we'd already taken out loans to get the things we needed while I was in school not to mention my student loans that needed to be repaid.

    I filed for my disability because I got so I couldn't even do simple housework. I put on tons of weight from medications and inactivity. My whole life changed drasticallly. My health went down hill. In the last 5 years I have almost died from pneumonia twice, my knees are so arthritic that I can hardly get up after sitting, I had to have a gastric bypass to save my life.

    My FM seems to have just progressively gotten worse over the years. I am now 51 years old and am in daily constant pain which is being treated with Oxycontin 80 mg. twice a day. Weather changes, physical activity, changes in barometric pressure, heat, cold, and stress make my pain worse. I often tell my hubby that I hurt clear down deep into the bones and I don't think I could feel anyworse if I had bone cancer. When conditions are all good, I will have a small change in the intensity of pain. When I'm in the hospital and have to lay in a hospital bed, I am in more pain which has to be addressed. That's always fun!

    I make myself be as active as I can. I even went sky diving a month ago. I'd always wanted to go and my kids are all now raised. I figured that if my parachute didn't open then Oh, Well--At least I'd be out of pain. I actually prayed that my parachute wouldn't open. Then no one could blame me for taking my own life.

    The only time I don't have any pain is when I'm in a warm therapeutic pool or a hot tub. I have tried every supplement, drug, or snake oil they make with no results.
    I have done the Guaifenesin, Neurontin, and every other latest craze. The best Dr. I've ever had,(she had FM) died in a scuba diving acccident 2 years ago and I haven't been back on track since. The reason I miss her is she was will ing to experiment and try new things. Now It's hard just to find a Dr. that will recognize and treat FM.

    I hope with all my heart that you aren't on the same track I'm on. No one deserves this. I pray for a cure and I have hope that there will be something out there in the future. I take continuing education classes to keep my nursing license current even though I have a hard time concentrating on studying. If I didn't have hope I wouldn't be doing that.

    When I started out, my pain on a scale of 1-10, averaged a 2 over the course of a day. When I was working it was around a 5. When I quit work it was around a 7. Now I average about a 5 but that's with oxycontin on board. I used to have a pretty high tolerance for pain. I don't know if my tolerance has changed or my pain has increased. Good Luck Mr. Pain.
  9. mrpain

    mrpain New Member

    It hurts my heart reading all the replies ya'll gave and to know the sufferings that we all have to endure.. I want to hug each one of you.....I wish I could somehow do or say something that would make things better in each of your lives..

    My prayer is that one day real soon, they will find a cure, or at least find a way to ease our symptoms until they find the cure. Ya'll take care & God Bless each one.
  10. Fibrolady37

    Fibrolady37 New Member

    mrpain,
    I have a very bad case of me,cfs,fms & i have 37 other illnesses so i guess you can say i have a lot on my plate!
    I had loads of serious aches & pains while i was at high school & now as i look back i now know that i had cfs.
    I played lots of diffderent sports & i was forever saying to my dad that i was in agony he said he thought it was arthritis my whole family have it.
    I hate these dds i really do but i cant get rid of them i wish i could.
    Hope this helps.
    Fibrolady37.
  11. mrstyedawg

    mrstyedawg Member

    I have had CFS for 22 years. I became ill when I was 19. At that time I was working, and continued working. I would have horrible weak spells that would leave me in bed for days at a time. But I could still do things that I enjoyed. I had 2 kids and felt better when I was pregnant. Quit work when I had the kids, no way could I work and be a mom. My health has slowly went down hill. I am now 41 and totally disabled. Just trying to get through the day and doing the most simple things is very hard. The one thing I have noticed is that for 17 years I could sleep nonstop but I could do more things. The about 5 years ago I developed insomnia cannot find anything to help me sleep, I think that this has contributed to my health deteriating.