I know that many of you who read this blog also suffer from chronic pain disorders like fibromyalgia, lupus, arthritis, etc. My question is this: Have you found fibromyalgia or any of the chronic conditions to be progressive?
I have been told that fibromyalgia is not progressive, that in fact it often improves over time. I was diagnosed in 2003, and my symptoms have become progressively worse--to the point that I REALLY have a hard time getting around these days. I have to push myself hard to do simple things or to leave the house for shopping, church, guild, etc. God bless my doggies; if it weren't for them, I'm afraid I would have become a semi-invalid by now. A shut-in. Oh, don't you hate that word? I don't want to be no shut-in, folks.
I'm really getting scared about this. I'm thinking maybe I was misdiagnosed seven years ago. What do you think? Can fibromyalgia be progressive? Am I doomed to be a shut-in? Eeeeew!
Do you just get tired of pushing sometimes and want to just give up and let the fibromonster win? I'm just sick of the whole ordeal, myself. When you have to give yourself a pep-talk to even crawl upstairs to the sewing room, it's pretty bad. Activities that I used to love and look forward to are becoming dreaded chores. I have a short vacation planned for next week, and I'm even dreading that. Quilting retreat is coming up in a few weeks, and I just don't have a clue how I'm going to manage that one.
But for right now, I think I'm going to hobble to the shower and get ready for church. I've missed the passed two or three Sundays (can't even remember), and I'm determined to get there today. I hope.
Happy, pain-free Sunday to all my good blogging friends.
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On 09/12/2010, Ruth said ...
Hi Susan
Sorry to hear that you are in so much pain. I have no personal experience with chronic pain, but my father lived for years with cronic rheumatoid arthtitis;grit and determination was what kept him going. I know that stress plays a big part in these illnesses, and you have had more than your fair share of that! Maybe your little holiday and the quilt retreat will help,don't set your quilting goals too high just think of it as a chance to relax with friends.
Sunday Blessings Ruth
On 09/12/2010, Helen in Switzerland said ...
Hi Susan,
as Ruth said, I think stress is a biggie here. Don't underestimate the effect of everything you have gone through in the last year. That would have wiped out many people without health issues. I think you should take time and do things that you enjoy and make you feel good. Maybe it's your body trying to tell you to do just that!
On 09/12/2010, Barbara Anne said ...
Hi sweetie,
As you know, I have lupus and was diagnosed in 1999 at age 48. The main problems with lupus for most folks is fatigue and arthritis and those issues make you want to throw in the towel some days because they interrupt plans, ruin enjoyable activities, and are SO ANNOYING. Of course, stress makes it all worse.
Two things to consider, based on what I've been told by doctors.
1) Chronic illness and chronic pain often cause depression. Better living thru chemistry may be the solution. Talk to your doctor.
2) After I was diagnosed with lupus, my fibro "trigger points" became sore like bruises when touched and I was told lupus and fibro often go hand in hand. I hope you don't have lupus, but if you do, going out in the sunshine can cause a flare which intensifies the fatigue and the aches for a time (days, weeks, months). Ask your doctor to check your ANA (antinuclear antibody) level and your sedimentation rate (under 15 is normal and when elevated, indicates inflammation). The ANA is a ratio, 1:40 or less is normal. My 1st one was a whopping 1:600. The only benefit to knowing is understanding how to help yourself.
One other thing about lupus is that often folks with lupus suddenly become allegic to sulfa. I had no known allergies and the 1st doctor I saw in 1999 put me on Celebrex. All of my odd symptoms became much worse and stayed worse until an astute rheumatologist deduced 2 weeks later that I was having an allergic reaction to Celebrex. Lo and behold, Celebrex has a sulfonamide in its chemical makeup. I was much better once off Celebrex.
Sorry this has turned into a book and a medical book at that.
Hope you get to the bottom of why you're feeling worse and that you feel lots better soon. Spend some time in a good rocking chair.
I agree with Ruth that the quilting retreat and the vacation are both times you can relax and enjoy yourself, no rules, no schedule, no hassles. Those times away will do you good!
Hugs!
On 09/12/2010, Sharon said ...
(((Susan))) I can't imagine how this would feel, so can't really help with the medical aspect of it. I'm so sorry you have to deal with it. Just a thought - would a class in water aerobics help? I joined one almost a year ago - and although the water aerobics is fun and relaxing, I also enjoy the social aspect of it, as we have a "social hour" afterwards.
Take care.
On 09/12/2010, Dayna Williamson said ...
All good points in previous comments. Another thought ....you could need a change in the pain medication you are using. And yes....depression comes hand in hand with chronic pain. It is not shameful to need something for depression as it once was. A good conversation with your doctor is in order. Will add you to my prayers.
On 09/12/2010, Kai said ...
I echo Barbara re: hoping you DON'T have Lupus, but it couldn't hurt to find out. The only thing I have to add is this: IF you do - please, please beware some of the meds. Prednisone destroyed my teeth, my skin, and dried out my hair. PLUS, it 'helped' me gain almost 100 pounds. I had the doc take me off it after 2 LONG years. (They have to wean a person off, so I was told. Barb, what say YOU about that?) During the weaning process, they tried me on Plaquenil. O.M.G.! Tho' they cautioned me to let them know if I noticed any problems with my eyesight, I never had TIME because it truly happened so quickly. Lost my right eye vision entirely. For the last 7 years, I've taken NOTHING for Lupus OR Fibro. Well, now & again I do take aspirin if the pain is so horrid I start getting dark, depressive thoughts. But 99% of the time, nothing. Do I hurt? Yep. Almost always. And I do about half of the activities I used to do. It breaks my heart, but I keep forcing myself to remember that I am the ONLY still-breathing family member who had Lupus. So I keep plodding along. Sorry - too much jabber. But I strongly relate, & hope SO much you can find a solution for pain management. Love you!
On 09/12/2010, Mary said ...
Oh Susan, I so hope you were able to get yourself out of the house and to church. I just returned from church myself and it always helps. It was a little difficult considering what is going on in my life and "the man" that sits up front in the choir. And, then their is always the chronic pain issue. If it isn't one part of the body, it is another! I certainly agree with the others that mention stress being a big factor. You have done remarkably well with the "past year" that you have gone through. Pat yourself on your back and think about all the many things that you have accomplished. Right now, goals aren't as important as finding peace in each and every day and thanking God for what he has given. I know how tiring all of this pushing oneself can get. But, it seems as though that is what most of us have to do. It would be so nice if there was a magic pill but that is not our reality. Please get another opinion on the medical diagnosis. It can't hurt. Keep smiling, even if it hurts. ;>) Hugs, Mary
On 09/12/2010, k&c's mom said ...
Susan:
I don't have any experience with fibro or lupus, but I do have experience with friendships. I am sorry for your pain and I'm praying for relief and answers. We can be the friends who lower you through the roof like in Mark 2: we want to see your healing come, bloggy friend.
On 09/12/2010, vickie woodward said ...
Hey Susan
I've been following your blog for a long time,but have never commented.I admire you so much,because I also have fibro.I have had it for 20 years now.I am always amazed at how much you are able to do.I believe that it is progressive .The changes in your body that the illness causes become more pronounced as you get older. Its a tough hard road we are on.My advice after all these years of dealing with this would be to stop pushing for a time.All your muscles need a rest.Your mind needs a rest. Take as much strain off yourself as you possibly can. Maybe that means having groceries delivered and skipping activities that you dislike andeven some you love.Not forever! It just becomes cumalative,the fatigue and pain. For many years I went for warm water therapy and it was helpful for a time.Acceptance,patience with yourself and hope that things will calm down again,which they always do,will let you ride this out. Losing your husband meant you lost a buffer .Now there is so much more on you.Eventually you'll find a new normal.I don't think you'll end up housebound,but you must slow it all down and give your symtoms a chance to calm down. I hope this helps.I so understand your pain and fear.Good luck
On 09/12/2010, blop said ...
My daughter has suffered w/fibro for many years w/o relief until she moved to Arizona. The warmth and the heat have helped immensely, along w/the pool and swimming in the warm waters of the summers.
Maybe if you try a vacation the the heat land, it will give you a taste of relief. I know I feel so much better when I go south for the winter...no aches, no pains...delightful.
Give yourself a break and just rest for as long as you need.
On 09/12/2010, sylvia weitzel said ...
Susan, I agree with everyone. You need to go to the doctor. Rheumatologist (sp) specifically. I do have Lupus, RA and Fibro. Fibro can be progressive. Remember the diagnoses of Lupus may take some time. I was sick 5 years before my ANA test turned positive. It is all I can do to get out of bed sometimes to get to the bathroom. It isn't just fatique but overall EXHAUSTION. I feel like I have the flu all the time. Somewhat like a wrung out, limp washcloth. I pray you don't have it. It would be wise to get tested. Sending soft gentle hugs and prayers!
Sylvia Weitzel
On 09/12/2010, Chris said ...
I've had fibromyalgia for 20 years now. I was told it can get better, it can get worse or it could stay the same. I've experience some of all three. I was taught that FB is worst in untrained muscles, so that has been the foundation of my program. Low or No impact exercise 6 days a week. If you need a walking companion get a dog! :)
On 09/13/2010, Sandra Neel Hutchins said ...
Dear Sweet Lady,
I have lupus and rheumatoid arthritis. Both have been worse this summer than ever. I've had to give up my vegetable gardening which I loved. I'm holding out to keep my rose garden and flower beds. I'm too stubborn to let my husband help me.
Like several said, you may want to ask your doctor to give you some tests to check for lupus. It is hard to discover if the ANA is not high, but doesn't mean that you might not have it.
It looks like you have many friends who read your blog who have lupus or fibro. That alone must be helpful.
I get angry that my ability to do the hard outdoor work has become so limited this summer. HOWEVER, I tell myself that lupus and RA come in flares and that this is just a really bad one that has lasted all summer.
Hang in there. Hopefully your flare of fibro will get better. And, oh yes, stress makes my lupus flare so much more. Things will get better for you. God bless.
On 09/13/2010, Pat said ...
I have chronic pain and some days just want to stay in bed, but I get up and keep going. by late morning or afternoon it's "better" though I tire pretty easily. There are other chronic conditions I deal with, such as heart rythm medication, esophagitis medication. The whole slate of meds and scheduling sometimes takes its toll, too. Lately I've been dealing with occular migraines... There's always a "fine tuning" going on and it can be a hassle. My daughter gave me a paperweight some years back that says, "never, never, never give up" - Winston Churchill Resting is not giving up. Sometimes we just need to rest instead of pushing through it. I agree with those above who advise more tests for lupus or possible change in medication. Even that is daunting, but just take one step at a time. Bless you - Pat
On 09/13/2010, Sandy said ...
I have recently been diagnosed with fibro and have relied on yours and other blogs for a lot of the information on how to cope with this. I can also tell if my stress level gets high the pain increases. And you've certainly had a lot of stress this past year. I agree, you should go to the quilt retreat, enjoy your friends, but don't force yourself or push yourself into trying to complete too any items at one time. The most important thing I've learned is that it's okay for me just to sit or take a nap or read a book and NOT to feel guilty about it. That was the hardest thing for me to do - I felt like I should push myself to complete household chores, laundry or sewing projects that I should enjoy doing, rather than regretting them. Sometimes we're our own worse enemies. I overdid it this summer, tyring to can too many vegs and peaches and I paid for it the next few days, with the fatigue and pain...
take time to rest and enjoy your "furry" children, they love you too like we all do..... hope you're feeling better soon.
If you don't mind, email me, I'd like to send you some information regarding "Vemma" that I take daily and it helps me with the fatigue an pain.
On 09/13/2010, Sandy said ...
In my other comment, for some reason my name won't allow you to email back to me, probably something I nedd to change in my settings. Anyway, my email is: sanny4949@yahoo.com or call me 229-942-4948.
On 09/23/2010, Vickie Limberger said ...
Hi Susan,
I have more of a question than answers. I have never been tested for fibro. I have bouts of muscle soreness, joint pain, My hips hurt, my legs and knees. Sometimes my elbows. I also have some stomach bouts with cramping and soft stools. I can go a long time without any problems then all of a sudden I am a cripple. I am only 43! The question I have is do you sometimes get a fever with these bouts? Especially after doing alot, like yard work? I am sort of the type that is afraid to go to the dr.
Thanks for your blog. I love it and read it every day.
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