Progressive FM and this summer bites

Discussion in 'Fibromyalgia Main Forum' started by ilovepink4, Aug 10, 2010.

  1. ilovepink4

    ilovepink4 Member

    I believe FM is progressive. I know lots of ya'll do too. I used to look forward to summer because I felt better. I could do some gardening and could leave the house for a few hours at a time instead of my 1 hour limit....

    Last summer I felt awful but we had a cold, yucky summer so I didn't get worked up over it....this summer has been more typical and I still feel like crap.....i am so disappointed....i feel just as bad in the summer as the winter, now.

    This illness is truly progressive. I wonder if it will level off at some point? What has happened to you who have had this for 15 or 20 years? I have been diagnosed for almost 7 yrs now.....

    I am feeling is hard to rally and get fired up when you watch your husband and kids out doing things and you are always left behind.

    how has summer been for everyone?

    I don't know what I would do if I didn't have all of you to talk with. Thank goodness for everyone here at "the board"!
  2. msgirl67

    msgirl67 New Member

    Hello~ I also believe that this disorder is progressive. I have been seeing my pain doc for over a year and they have just recently diagnosed me with FM. They have wanted to talk to me in the past about it, but I just kept telling them no...trying to ignore it. I went from boating, swimming and running around with my girlfriends last summer to laying on the couch most of the day watching HGTV and just going outside to take the dog out. I don't think I have truley had a winter yet with the pains that I have had this summer. I live in the South, so at least it doesn't get as cold as other places. I think the hardest thing that I have had to deal with is that my daughter gave birth to my first g-baby in March and I just hate not having the energy to play and hold her like I should. You are right.....this summer bites!
  3. Tizz

    Tizz New Member

    This summer, the heat is affecting me in ways I have never been affected before!

    I grew up in AZ!! The heat here in TX is NOT as bad as that... yet I've never in my life been this badly affected by heat!

    And yeah, you have a point... If the summer is like this, what will winter be like??

  4. munch1958

    munch1958 Member

    I'm in Central Illinois and HATE THIS WEATHER. Historically, I am not a fan of summer. I feel worse and am always bloated and cranky from the heat. I love winter weather and am counting the days until fall and/or cooler weather.

    I do not agree that Fibro is progressive. I agree with Jo Anne Whitaker, MD when she said that fibromyalgia is just a descriptive word for Lyme Disease at the 30th Anniversary Conference in May 2005.
  5. campbeck97

    campbeck97 New Member

    I know this has been progressive for me and I was DX in 1996 but had it several years before getting the actual DX. And yes this summer has been the worse ever, usually I so look forward to working some in my flowers and veg. garden and a let up of the pain from the winter months but this summer I have had sooo much pain, fatigue and flat couldnt care less about even going outside this year or if my gardens burn up. Here the summer is about to end I I like many on here didnt get to enjoy it at all.I hate to think how bad this winter is going to be on alot of us. God be with us.Take care and God bless each of you!
  6. loto

    loto Member

    I also believe that FM is progressive. It has been for me, and I've been diagnosed for 2 years.

    I was looking forward to summer, also. But, since my FM is progressing, this summer has been terrible. The weather here has been so hot and humid, with heat indicies over 100 degrees. And it's lasted for what seems like the whole summer. My tolerance to heat and cold is getting worse, too. The heat and humidity makes me crabby and feel terrible.

    I'm so ready for Fall!
  7. karynwolfe

    karynwolfe New Member

    This is probably very "random" but watching your posts for at least the past year, I honestly, seriously think, that Fibromyalgia is the least of your worries. Fibromyalgia is NOT progressive (progressive means it causes continuing damage to the body), but the various illnesses that it accompanies, are. It's a terrible syndrome to have on top of ANY illness, and you probably have FM, yes, but I really feel that M.E. (or CFIDS, if you want to call it that) is the real problem you're facing. It's not the same as FM, and applies far more to just about every post you make here.

    Do some research on M.E. at and maybe be enlightened as to what helps more; the problems you post about are not typical to just fibromyalgia (although M.E. can trigger its own fibromyalgia syndrome). There is also Foggy Friends, a UK-based support group for M.E., if you want something more specific to the condition. You need to know what you're facing in order to fight it.

    [This Message was Edited on 08/13/2010]
  8. coolma

    coolma New Member

    I've had FM for 14 years...just won disability settlement from private insurer. My specialist insists it is a result of damage to the spinal column and neck (degenerative disc disease). It DOES get better if you give your body the time it needs to REST. And, I am talking years, not days, months, or weeks. Symptoms change with the seasons and we are susceptible to extremes, that is why a hot summer could be more painful (and is!), a cold winter (bad), and a rainy spring (really bad). Strong cold winds also can trigger spasms. As can over exertion and over exercise. I have followed her advice and, without supplements, but am on meds for pain as needed....I managed to move out of the city to the country, remarry, walk daily, keep a house and actually have a window of about 5 hours daily that I can do things I like to do. Shopping, especially for clothes and gifts, is too hard on me physically, so have learned to use the internet to shop. My hubby takes me for drives in the country and I always protect myself from sun as we are over-sensitive to light with FM and it can trigger migraines. It's not a cure all, but from what I see, everyone wants an instant fix...and there arenot many willing to give this condition the rest it needs to heal. The body has the inherent ability to heal itself if given proper rest and time. I did not run to many doctors, I did not run to therapies everyweek. I rested, I read. I cried alot...but what good did that do? I found a way, even ;by telephone contact through my church, to help others who were homebound. It helps to forget your pain. I did what I had to do so the spine could heal to a certain extent. Repeated injuries (slipped or ruptured discs) will not heal completely so you will always wear out faster than normal. It's not the old life. It's a new life. But, there has been a degree of healing. Good luck and give yourself a chance to heal!
  9. clementyne

    clementyne New Member

    ...and I have been wondering about it for some time now. I haven't had my diagnosis for long (comparatively) but have struggled with symptoms for at least 20 yrs. Back then, I was young & full of - if not energy - at least longing! I didn't have insurance & I didn't have much money so I called the pain I had arthritis & treated it with Ibuprofen. Even then, I thought it was odd that my pain was worse in summer. My symptoms are worse now than they were but I am older now, too & wonder if that has something to do with it.
    I have always loved to work in my garden or just be outside but the heat makes it impossible to spend time in my yard. I live in Indiana & the 'tornado weather' is horrible for me. Winter is better, because I would rather be cold than hot, but not by much!
    Coolma, you remind me of myself. I dream of living in the country and married (1st time @ 46!) several yrs ago. My husband also takes me for drives in the country & we love to walk in the woods. Now, I know I cannot go too far so I walk as far as I judge I can go & still get back & send DH & DD(darling dog) on ahead. I pack a book, find a nice spot & wait their return. That way, I am not denying anyone, including myself.
    I stay busy. I volunteer as a counselor thru my church. Work as a FX makeup artist (which I LOVE) for a Fine Arts Ministry. I know that I need to spend more time resting but I struggle with guilt. I want to live as well as I can. I push myself, I know but I am learning not to push too hard or too far.
    And you are right, Coolma - it's not the old life but it is a new life! It is life!
    Be Blessed,
  10. campbeck97

    campbeck97 New Member

    I want to go to your church and get all pretty, do a make over on me>When Can i come?lol that would be fun i think and a real callenge for you haha. Ive always wanted to learn the proper ways to apply makeup God bless Becky
  11. campbeck97

    campbeck97 New Member

    when I started out I could walk just fine, work a full time charge nurse job, clean the house , do laundry, go to my sons school and sports activities. go places with my husband and still have sex and still had the desire and the energy for it. we lived on our farm, took care of the cattle daily, and milked morning and night. Took care of the pigs, chicken. geese. ducks, turkeys.and every year or so we all went on vacations. I even tried to keep the very large lawn mowed and trimmed, worked like a dog in my flower and veg. garden and canned the food for our winter supply of food. Now I BARELY can get out of bed some days,have no energy , rarely go to store to shop for hubby,,,he does it all , I dont cann food, icant do the gardens, I cant take care of all those things I loved to do and at the end of each day i was exhausted but didnt have trouble sleeping. Now I can never work as a nurse agin as this has affected my mind so much and my abilities to care for others in a safe manne. so you can see where I say it most diffintrlyis progressive. And that not even talking about the level of pain that has changed gotten so much worse and the amounts of drugs I have had to increase just to be able to walk, wipe my own butt, cook small meals sometime the bare essentials around here. Now my days are filled with guilt, sorrow, miseable pain. insomnia,missing my once sharp mind and each day is long and lonely and guess what starts all over the next morning that you try and crawl out that bed hoping it was all a bad dream and you have your old life back but now the pain and stiffness kicks in and it goes downhill from there for the rest of the day. So welcome to my non progressive fibro,world,,,,, yeah right.
  12. Janalynn

    Janalynn New Member

    Fibro is not CFIDS, nor is it Lyme. One can have "just" Fibro. (which is enough!!) Chronic Fatigue certainly accompanies Fibro, and CFIDS can accompany it as well, but the symptoms described by many here are normal for Fibro.

    I understand that people feel it is progressive. It may not be under the medical term, but many of us sure feel like we're getting worse. Knock on wood, for the past few months, I think I've evened out a bit, but I don't feel like any better, just not feeling any worse. Part of it...and this is hard to that I haven't had as many things to miss out on. I think I notice how awful I feel more when I'm missing activities or things that my family is doing that I can't partake in as opposed to when I don't have anything to notice or feel guilty about. Does that make sense? When I can let my body relax, rest when I need to etc. I definitely feel better, at least mentally.

    I still have to work, but not everyday outside of the home. On the days that I have to go into the office, I do notice how much my body hurts.

    I promised myself that I would have a summer. Well, I didn't have much of one once again. Now as mentioned, it's about over. That makes me mad and sad. I don't 'do' cold very well at all. I'd much rather be hot. I spent most of my days inside on the couch under the ceiling fan in the air conditioning. What a waste.

    My pain is somewhat manageable with my medication, sometimes nothing helps. Pain is my worst symptom by far. It is an everyday occurence. My headaches are horrible and nothing helps those. My fatigue is terrible because I don't sleep well at all. It's a struggle that I will continue to fight. I have no choice.

    I know what I have. I have FM. I don't have Lyme, I don't have CFIDS. The past 7 years I have gotten progressively worse. (I've had symptoms for over 20 yrs) I have finally evened out a bit but I think I have had to absolutely adjust my lifestyle in order to do that.
  13. clementyne

    clementyne New Member

    You might not want me to do your make-over! I do FX (special effects), last night I turned one woman into an end stage AIDS patient & another one into a victim of human trafficking...but hey! I'm game if you are!Lol!
  14. campbeck97

    campbeck97 New Member

    Thats sounds fun and interesting! Yes i'm game im ready for a different look, hahaDo you do these for movies, plays etc?
  15. clementyne

    clementyne New Member

    I do this thru a fine arts ministry which includes plays, some film & even a music video for a christian band.
  16. Empower

    Empower New Member

    I believe FMS is progressive and YES - THIS SUMMER BITES!

    It is almost over and I haven't been able to enjoy but one day of it!
  17. 3gs

    3gs New Member

    Usually summer is good for me and can't wait for it. not sure what happened with this summer,but its been awful.

    Its so hard with gkids wanting to do stuff(swimming)and now school is starting.

    CFS/FIBRO mine is progressing for sure. Im so brainfogged today,can't spell and not sure if my posts are even making sense!!

    Afraid of winter if summer was this bad
  18. Chelz

    Chelz New Member

    You sound exactly like me. I was just telling my mother that in the summertime, in the past, always made me feel slightly it doesn't matter. Just as bad in the summer, actually much worse now. We have had an extremely hot humid summer, if my body could scream, it would be doing that all day.

    I has to be FM, and YES, I do believe this condition is progressive. And for any doctor out there to say it isn't, they are not keeping themselves updated.

    This summer has ben horrible. I am counting the days for fall to come when it cooooooools down a little and I don't feel so inflammed, fatigued, and just plain yucky.

    I was diagnosed in 2002, but had this condition since the late 1980's. There is a brief time between October and maybe the first week of December, where I usually feel better. I think it is just because the weather cools down at that time. The summer beats the crap out of me, I understand, you're not alone. Hugs, Chelz.