I thought Fibromyalgia was not progressive?

Discussion in 'Fibromyalgia Main Forum' started by leanonme, Jun 30, 2003.

  1. leanonme

    leanonme New Member

    I don't have any diagnosis just yet and feeling very confused and upset about what is going onwith my body, I have no endurance any more muscles fatigue extremely easily. It didn't begin that way, started with tingling and hot and cold then tingliing turned to burning and then shortly after sharp stabbing pains in muscles, numbness has been a feature early on but now more frequent and more area involved.

    I am very nervous about all of this as lightheaded and dizzy spells and feeling like I can't think is almost worse than all the other stuff.

    How many of you find that it reaches a certain point and stays there or is it going to be a continual slide into disability?

    I have only had these main symptoms for a total of ten months, that is not long for so much change and I am scared of worse to come, I have had my leg buckle with extreme ripping pain in that calf has anyone had that with firomyalgia?

    If it is fibromyalgia that I have and I can't see anything else that I haven't been tested for and found negative other than lupus and Lyme (we don't really hear about it in this part of Canada ) so I am starting to think that it must be. Any ideas please? I really think the leg thing should indicate something! Some direction to go in. I am going to see a new Dr. on friday and ask about seeing a rhuematologist that is who I should see about this? or can a regular family dr. diagnose fibro?
  2. leanonme

    leanonme New Member

    How much pressure do you use to tell? I swear I feel pain everywhere not just certain points if I press, my husband tells me I am the real princess and the pea characterLOL.

    I will be persuing the dr.'s relenlessly as something is dreadfully wrong and I need to know what and even if I don't get a name for it all i need to get the pain and stiffness in my neck under control as it is ruining sleep and making driving difficult.

    also the burning feet are not great but the burning in the urethra in infineately more bothersome!
    Woops! I guess from reading the thread on trigger points that it is some type of therapy and not just another name for the tenderpoints?
  3. leanonme

    leanonme New Member

    I appreciate the reply's,

    You say that it is easy to treat? What do you do? I have tried to press the spots they show on the body charts but I am either not doing it right or I don't have this either!

    I have some spots but not even half.

    I also didn't have ovewhelming fatigue all that often lately I do but seems more like that came with the depression.

    I also don't feel like a truck hit me in the mornings I can be stiff and sore but once up and around the early part of the day is usually my best, it is later in the afternoon and evening that I find them creeping up and taking over again except for my neck which is bad twenty four seven.

    I just don't seem to fit anywhere and I am so confused.

    Did the fatigue start right away with you or did it take time to add it to your symptoms, does it hit you all day or later in the day ? Does you stiffness last after you are up for awhile or is it there all day?
  4. leanonme

    leanonme New Member

    Please respond as I know there are people out there who can help me by comparing what I am going through to what some of you did.

    The more the better.

    Someone? Anyone?

    Anyone want a little cheese with this whine!

  5. Mrs. B

    Mrs. B New Member

    Just my two cents worth.

    From what I understand, the books say that FMS is not progressive but, those of us that have it know better. However, we can also get it better under control with diet, stress control, a little excersis if possible, and proper meds when needed.
    As for trigger points, I read a couple of books about them and it is my understand that they are related to Myofascial Pain Disorder and pulled muscles... not necesarily FMS. However, I have used the the techniques and was surprised that after 2 mos of pain and 3 doctor visit I was able to "release" the knot in my upper arm and my wrist felt better each day that I worked on it.

    Lisa
  6. leanonme

    leanonme New Member

    YOU are all awesome!Thank you for your reply's.

    I will look for that book and anything else along that line I have noticed
    other books mentioned in other threads will look back for some titles.

    I really need to get a grip on this before it takes over!

    I am fighting a cold or something last couple of days and all sx.'s are worse.

    Wishing you all a "well" day!
  7. MissyTx

    MissyTx New Member

    I have been running from dr to dr since '94 and have been told all kinds of things and was just dx last Sept with FM/CFS. I am on the side that it is progressive! I have really gone downhill this past 2 years! Just in the past 6 months I have been having a lot of problems with the pain in hip and site problem! My vision is bad enough right now that I can't drive! I am scared to death! What if a bad spell comes along while I am on the road??? It is scarey!! I wait and go everywhere with my husband! And I just hate being dependant on someone! But I guess I have to wait it out and wait for this "bad spell" to pass, and things will be better when I go into remission!

    Be sure to do the "list thing" that helps a lot when you are with the dr! I will pray for you and pray that you get a good rheumy!

    MissyTx
  8. Dara

    Dara New Member

    progressive. I have had FM since teen age years, or maybe even younger. It used to come and go, and I could still work through the pain. I used to think everyone felt this bad in the mornings. My PCP diagnosed my FM but sent me to a Rheumatologist for verification. Also, there is a book by Devin Starlanyl called "Fibromyalgia & Chronic Myofascial Pain", it's a lot about trigger points.

    I also get the dizziness, light headed feeling. I feel like my head is fuzzy and can't concentrate. This symptom is what finally caused me to stop working all together. Just recently my vision has also changed.

    When I was originally diagnosed I was also told that FM was not progressive. But, it certainly has been with me. Of course, is it progressive or is it just harder to deal with as we age? Who Knows!!

    I hope you are able to find a good doctor who can help.

    Dara
  9. Bellesmom

    Bellesmom New Member

    I feel we all have such individual response to whatever it is that's eating away at us!! I have definitely worsened in the past 3 years to the point of not being able to type even 5 hours a week on my at home transcription job.

    Yet for the past 3 weeks I have been having quite a bit of relief from the horrible fatigue since I've been taking ProEnergy and a couple of other supplements bought from the store on this website. I still have terrible pain, can barely walk or stand up but I AM able to do some things I haven't done in years.

    The progression from bad to worse that I've had seems to have come from not being able to throw off viruses, flus - whatever you want to call them. Anything that comes along I seem to get and can never return to previous condition. I always get worse and stay that way. So in that way I have become worse. I am also very financially challenged and so am not able to get the medical help that MIGHT be out there (altho I have yet to find it).

    I am really glad for this site as it's the only place I've gotten any encouragement and insight to self-help. The medical community that I've found seems not to care with the exception of a naturopath I've been seeing. My new PCP makes sounds as if she might be interested but I will just wait to see what comes of that. My old PCP asked my husband the other day why I left him for another doctor. This is a big laugh as he gave me Vioxx and told me he had done his part now it was up to me.

    I have been bedridden about 22 hours a day for almost 3 years until the past 3 weeks. It is amazing to me that when we tell these doctors something they dismiss it completely as though we are making this up!!

    Anyway - I think you will find many people who feel this is very progressive and others who have actually found a way to get a little better.

    Pam
    Spanaway, WA
  10. GooGooGirl

    GooGooGirl New Member

    It has to be progressive otherwise how do people go from being diagnosed and then eventually years later end up on disability? If it is not progressive you would be very bad from the beginning and stay that way. That does not seem to be the case with the stories I have read. I feel that I am getting worse too.
  11. jolly

    jolly New Member

    I'm with Starcat on the trigger point therapy and will tell you a little more about it. Everybody has trigger points. We just get all of them! It's a knot in your muscle filled with poisons, that causes your muscle to shorten and stay that way. Some of them are close to nerves. Basically, they restrict the blood flow through your muscle and since all muscles are connected, you can have a trigger point in one place that refers pain to another place.

    The Clair Davis book is wonderful - has diagrams and explanations - very good. Basically you mash these knots,pushing on them in the same direction, and it's very painful. After you've gotten some of the poison released, the pain of rubbing them decreases. You know when you've found one because they are intensely painful to push on. It usually takes 3 to 5 days to rub one out and the results are unbelievable.

    You can order the book through amazon for less than $20 and ups delivers it to your door. Of all the remedies I've read about, this is the one that helped me the most. Good luck to you and don't freak out totally over all this. Believe it or not, you do learn to deal with it, although lifestyle changes will definitely be in the picture.

    As far as progressive, I don't know, but my troubles began as intense headaches for a period of years, then it suddenly went to my whole body and I could hardly walk. Now, if I play my cards right and don't overdo, keep all the triggers points at bay, I can still ride my bike, garden some, take care of the house, just not to the degree that I used to. Jo Ellen
  12. Elbryan

    Elbryan New Member

    I thought I was progressing but found out that what was going on with me was that I stopped doing any and everything that made me hurt or scarred me. My Dr had me do Aquatic therpy and since that time my muscles have gotten stronger alot of my trigger points have subsided (went from 11 to 4 in one month). My overall outlook changed when I my body begain to feel better. No one will be happy to hear this but I found that if I stayed on this board to long and read each and everything that it put me in a bad mood and then my symptoms would start up again etc. Now when i visit the board I look at the titles and if it is something that might help or that I think I might be able to give some input only then do I read on. I have gottern alot of help from the board.
  13. Elbryan

    Elbryan New Member

    The book FMqueen is talking about is one of the best i have read on FM. It breaks things down in very easy to read explanations. Another good one is Fibromyalgia and the Mind Body Spirit connection. This one helped extremely well with the mental aspects of FM.
  14. Annette2

    Annette2 New Member

    When I was first diagnosed, I just had the "muscle pain". I was told FMS was a "muscle" problem. Well, WRONG! Over the past five years, I've had: fatigue, brain-fog, carpal tunnel syndrome, reactive hypoglycemia, low thyroid, instant menopause (which I believe was caused by FMS) and subsequent hysterectomy. So I do believe it's progressive. I'm trying hard to deal with the symptoms and it's not easy, believe me. I work and take care of my house, shop, clean, cook, etc. I do the best I can. Fortunately I have wonderful doctors and they respect me and believe what I tell them. I'm sorry to tell you this because it doesn't sound very encouraging, but I don't think the textbooks are correct.

    Annette2
  15. Sunshyne1027

    Sunshyne1027 New Member

    My two cents is that its progressive. When first becoming so sick, then getting the diagnosis of FM, I didn't have the pain as intense as I read about. Now it is. I got more symptoms, ailments along with it all over the last few years also. Pain in my legs back and neck, have to use a cane to walk with sometimes. Migraines, irritable bowel, irritable bladder. Just more and more stuff pops up. I have progressively gotton worse in the last few years for sure.

    I really hate facing that reality, that its progressive to most. But it is.

    :(
  16. Iggy_RN

    Iggy_RN New Member

    I went through the runaround for years with every kind of doctor out there. I finally found a rheummy who specialized in FM,CFS,etc... ease your mind and get to the bottom of this ASAP. Sometimes these FM symptoms can overlap into more or less serious illnesses, its best to let the rheummy determine that. keep us posted, and take care of yourself, Love Iggy
  17. shazz

    shazz New Member

    Fibromyalgia has progressed me right out of my job, my social life and my very being.
    I know it isn't fatal but it sure feels that way sometimes.
    I feel that if I get any worse I will actually die.
    I have been up since 2 am, and am going to work as I only have two days left.
    My doctors all swear there is nothing more wrong with me, so I will have to believe them, but if they say it isn't progressive I will beg to differ with each and every one of them.

    Just my two cents worth!!
  18. kredca4

    kredca4 New Member

    Only I think, and this is just my experience, that as I have more co-exisiting Condition's, the Pain caused by FMS increase's.
    Ialso have CMD, and I know that one is Progressive, even with doing the Trigger point treatment's, of which there are a variety, that I use, I get new area's that aren't managed anyother way than by Muscle relaxer's.

    I have Mastoiditis, and the Pain has been unbearable, due to me having, Both FMS/CMD, and that is according to my ENT Doc. Since I can not take anti-inflammatories, I have to relie on the Soma's.

    Also have Spinal Stenosis, and Degenerative Disc disease, so these 2 condition's also make the FMS/CMD Pain worse.

    I have gotten better at treating my Condition's, but they have progressed right along with me and it Stinks.

    Oh the book by Mark Pellegrino, INSIDE FIBROMYALGIA was just recommended to me by a gal that helps other's find Doctor's in their area's. She sent me a ton of info in an e-mail today, I almost forgot I had written her, and deleted it, till my Fibro fog cleared and I knew who she was, glad I retrieved the mail.

    Check out, Fibromyalgia Frontiers it's a newsletter, and it's by a non-commercial enterprise, it's put out by the National FM Partnership.

    I also get the newsletter's from this site, I like to see what other "experts are saying", and I'm still so Confused, no wonder the doctor's are.
    Sincerely
    kredca4
  19. starstella

    starstella New Member

    I, like Jolly, had a few years of debilitating headaches, then began to have muscle pain symptoms. Now after 2 years of muscle pain, I now have joint pain. I do lots to take care of myself, supplements, stretching, massage, but now walk with a limp at times due to the joint involvement, especially in my hips.
    To answer your question, a family doc can diagnose fibro, but your family doc may refer you to a specialist to confirm the diagnosis. Start with the family doc. That way, if you develop new symptoms, your family doc has a full record of your complaints, with input from a specialist as necessary.
    Good luck, just because a lot of us have progressive symptoms, that does not automatically mean that you will too. Take things one day at a time, take care of yourself, and listen to your body's messages.
  20. leanonme

    leanonme New Member

    Thanks for the overwhelming response!

    I defineately am finding this whatever thing to be progressive and once i find out I will do all I can to beat it or at least keep it at bay.

    I have depression now but it is defineately because of the problems getting answers from the Dr.'s

    Iwas doing alot of running and lifting weights and was at the peak of my existence before this all hit so i bristle at any suggestions that it is from poor mental or physical habits!

    I have an appointment with the new dr. on Friday (a general practitioner) and see what he makes of sx.'s and then get a referal to a rheumatologist. I want to see if he or she will help me get the necessary tests for hypercoagulation.

    Reading the info on that seems most promising way to beat this.

    I am not looking forward to drugs of anykind as have shunned all of that so far in my life but how else to treat this?

    I want a cure not just symptom alleviation.Thank you for your input. I am so sorry for all of the pain so many are in. It makes me so angry that they dare to blame the patient so many times!

    If this new Dr. treats me like that I am going to get copies of all the test results so far and hit the road.
    We have few Dr.'s in this small city and I may have to do some travelling to find one that will work with me but it will be worth it! Take care all of you I will let youknow how it goes.