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They say it's not a progressive disease but to me it's getting worse!!

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Fibromyalgia
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Posted 6/28/2012 8:09 AM (GMT 0)
Just wondering if anyone feels their fibro getting worse over the years?
Pain started at around 4 years of age, painful feet then the pain spread to my back, shoulders and neck by secondary school, could barely hold my school bag and after numerous tests, scans etc the docs said it was just "growing pains" then the bad panic attacks started at age 11 then depression kicked in at 14 years of age, this continued til I developed hyperventilation syndrome and then the numerous other symptoms appeared over the years and now I get constant 'skipped heartbeats' and I eventually got diagnosed with fibro at age 29, I'm
31 now, how can they say it doesn't get worse, everyday there's something new and different, anyone else the same??
Posted 6/28/2012 9:53 AM (GMT 0)
Hi Chili
my story of FM started also long time ago , age 10 I had so many muscles cramps every day even small walk , then become worse at 18 when start the pain and stiffness specially my neck, at age of 22 i had very bad cramps allover my body i could not stand up , the i asked a Dr. he gave medications for seizers !! and that worsen my symptoms and increase year by year specially when I'm working more and married with life stress.( Thanks God my wife stand by me)
last year when I turned 30 I started myself research for my symptoms then finally I self-diagnosed it as FM ( I'm a pharmacist) then I went to hospital and a neurologist diagnosed it.
now I'm 31 also , I took already the control from it , yes I control it to an extent plus I'm taking supplements and the medication Lyrica which is very good for the pain.
It will get worse if you let it control you and the main thing help it is STRESS.
So
Feel it when it spreads and moves from back to legs , so on.
Avoid stress.
Take multivitamins and supplements.
Drink more water.
Ask doctor about Lyrica to control the pain.
Don't stay on one posture more time , always change.
Exercise is good but light only (Actually this I'm not doing as I don't have time,but I tried before).
Finally I tried something wow and very easy>> Music Therapy

I hope you will be fine with less pain
Posted 6/28/2012 11:24 AM (GMT 0)
Hi, Chili and Vivaldi, and welcome!  Vivaldi gave great information.  Chili, I think you are just developing some of the symptoms of fibro.  When we think of getting worse....I think they mean the pain.  I get heart palpitations occasionally but didn't have them in the beginning of the illness.  I was thoroughly checked out and that helped me. 

 

Anxiety can contribute to this illness.  Try to get a grip on that and also stress.  Stress will cause more pain.  Fibro's pain waxes and wanes, too.  You will have bad periods and then have some better periods.  If your pain gets worse and worse, you need to be checked out to see what is going on.  This happened to me this winter.  My pain was excessive and I almost couldn't lift my feet off the ground due to shooting pains down my legs.  I saw a rheumatologist for the first time and after a millions tests and x-rays, I was diagnosed with ankylosing spondylitis...along with fibro.  I'm being treated for that and am so much better all the way around.  So, don't think fibro is causing every symptom you have.  If you have a symptom that you are not sure about you can check here and see if we have dealt with it.  Always let your doctor know what is going on too.

 

I've had fibro for over 25 years and have had a full and enjoyable life in spite of it.  You will find ways to work around it to do what you want to do.  I try everything.  I do not tell myself that I can't do anything.  I surprise myself many times by accomplishing things I thought were impossible....like my spreading 99 bags of mulch in my gardens all by myself.  I just paced myself (took me 2 weeks to accomplish this).  Sure I had a little extra pain but I was using muscles that haven't been used in a while.  I sure gave myself a pat on the back for that and, as you can see, I still am!  tongue

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You just might see yourselves there.

 

I'm looking forward to getting to know both of you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

Posted 6/28/2012 12:49 PM (GMT 0)
Thank you for your replies:) I think some days I just get a little angry because I get stressed and frustrated when my daughter (age 4) wants to do games that I just can't do, sometimes I get low thinking that I'm a useless mother but then I have to remind myself there are worse off out there but the pain just gets me down so my doctor prescribed me Amitriptyline which I've heard bad reports about the side effects but I need something because I'm even considering leaving my job which I absolutely adore just because I'm not managing the physical side so I'm going on to do full time study at home!
I suppose as you say don't get stressed and manage it because we don't want it to get the better of us, today it's doing that but tomorrow I'll probably have a better attitude haha!
I've been tested for Lupus, Lymes disease, MS and even Crohns and Colitis before I got diagnosed because the symptoms were very similar! I'm just hoping that it doesn't cripple me in the end but I do have a very good doctor who told me that it would only do that if i allowed it to get the better of me so she suggested Pilates, does this indeed help?
Thank you Vivaldi, I have started the light exercise again and hope to build it up more but I have to admit I don't drink enough water so probably should, thank you for your advice:) and Sherrine, I'll definitely take a look at 101 thank you for your reply also and I hope you're both feeling ok today!?
Posted 6/28/2012 1:57 PM (GMT 0)
Hi Chili9,

Welcome to the forum. Keep moving as much as you can. The moment you stop, is the moment it will get worse. I advise walking as much as you can. That is what I do, and I haven't had a flare in a long time. Knock wood....

I see Sherrine directed you to fibro 101, it is a fantastic thread that she put together. I know you will find a lot of good info there.

I hope that your day gets better. I do think pilates is good for you. Never done it though, myself...

Take care, keep posting.

Have a wonderful day...

Hugs, Karen
Posted 6/28/2012 7:39 PM (GMT 0)
Hi Chili,
Maybe I'm the only one who thinks so but I do think Fibro gets worse. Mine started with a few tender points and a hideous back pain and over the years spread to body-wide pain, tender points everywhere and specific areas where I have extreme pain.

I have always been health conscious and into natural foods, treatments and I walk everyday and try to do a little gardening and yard work. I eat almost no processed foods, mostly organic and take tons of supplements including malic acid, Vit D, really, you name it, I take it.

I think the worsening is due to the normal aging process to some degree but I also think that Fibro has a way of settling into your system deeply and staying there.

Just my humble opinion and experience.
Posted 6/28/2012 9:29 PM (GMT 0)
Hi Chill,

I agree with all, but like woolrow, I do believe fibro is a progressive illness.

Ten years ago I was doing yardwork and moving sprinklers around,  Now I am on oxygen and can barely move.  My pain just got so much worse that I had to increase my pain meds.

I still try to do the cooking every night for my husband and me, but the rest of the housework is a real chore.  I can't do the grocery shopping and really can't go all that many places.  I gave up driving, so I feel like I have gotten much worse in ten to twelve years.

I agree with the suggestion of exercise.  I think that will make those that do exercise, a little more limber and able to do for themselves longer.  For me, I have a wheelchair every where I go now.

God bless you all.  I love this forum!

Lindaloo turn

Posted 6/28/2012 10:24 PM (GMT 0)
Hi Karen, thank you. I've been walking a lot lately, the fresh air makes me feel a lot better and you're right the less I move the worse I feel, but if I move too much it hurts also so it's finding that happy medium, so walking is working for me at the moment and I've heard good reviews about Pilates so will give it a go:) hope you've had a good day?
Woolrow, you're similar to me in the good department, i only eat fish and vegetables, no other meat and no processed foods and I buy organic as much as I can (not highly available
where I am plus expensive) and I did hear that vit D is recommended so I bought those supplements. I'm hearing a lot about Fibro and it's link to poor circulation also (I definitely have poor circulation) so I do a lot to help circulation and have even researched foods which are good for helping boost circulation:) and I really do agree that it is progressive!
Lindaloo, I feel for you, an oxygen tank? Bless you too:( I can't believe that they're are people out there who think fibro is a made up disease, my neurologist tends to think so..:-/ fibro obviously affects people in different ways and I wish they would come up with resolving what causes fibro:(
Hugs to you all!
And I love this forum too, chatting with people who understand, because not many people outwith do...
Posted 6/28/2012 10:27 PM (GMT 0)
Reading over my replies, I realise I'm having a bad spelling and grammar day, my apologies!
Posted 6/28/2012 10:31 PM (GMT 0)
no apologies are necessary!!
Posted 6/30/2012 6:30 AM (GMT 0)
It seems like mine has really gotten worse over the last 2 yrs. I'm 37 now and have been diagnosed for about 7 yrs now but had pain longer than that. My fatigue is what has gotten so bad well plus the pain. My rheumatologist said my muscle enzymes should be around 250 and mine is 750. He said that's why I'm having so much pain but after taking blood a few more times he just up and says well I dont know why it's so high. That was the end of it. I had so much hope when I started seeing him. Also I don't take any narcotics for pain. Dr's around here don't know about fibro honestly I kinda feel at a loss some days. I never ever go a day without pain. And most days it's chronic.
Posted 6/30/2012 8:54 AM (GMT 0)
Hi, Chili9. I do think it gets worse. My symptoms started about two years ago after an accident, and I found this website about a year ago. In the beginning, I actually thought the pain/fatigue was from work stress (so that gives you an idea of the level of pain - kind of just "tense in the neck from stress" type pain) or a medication I was taking at the time. I stopped the medication and the pain/fatigue persisted. about a year ago, the pain in my upper body was joined by pain in my legs after a bad flare up. So I now have pain in both my upper and lower body and like Enajones, I never ever go without a day in pain. I do seem to remember going through "good periods" and "bad periods" of pain as Sherrine mentioned, and having distinct flareups. I can say that I basically am in a constant state of pain now and the pain has continued to worsen in my hands, legs, elbow, and my headaches have also worsened.

I remember telling people on here that I am a disability lawyer when I first joined and someone saying "how can you work in that job with fibro???" I remember reading the stories on here and being worried that I would worsen. Unfortunately, like you, Chili9, I, too, am starting to have to scale back, which I did/do not want to do. And like you, I have a small child who I can't play with and parent the way I'd like to because of this pain and fatigue. :( Good luck.
Posted 7/1/2012 3:16 AM (GMT 0)
Andrea I too have headaches but I didn't realize it was probably my fibro till lately. They are about every day and they are awful!! I can't think. I have all over pain just like u. I also think my daughter has it and she's 20. My memory is sooo bad and keeps getting worse!! I don't work bc there is no way I could stand on my legs and I live in a very small town jobs are hard to come by there's no way to be picky. I hope things get better for u. I recently started Cymbalta 60 mg and it has helped sooo much!
Posted 7/1/2012 12:05 PM (GMT 0)
Linda thank you, and same goes for you:) Enajones that's a shame you feel you're getting nowhere with doctors etc, I was like that for years, I broke down in front of a doctor and he said everything is just in my head, 3 docs diagnosed me with fibro but took it no further and said no point in sending you to a rheumatologist because "they'll just say yes you have fibro but there's nothing we can do for you" it all brought me deep into depression, until I found a good female doctor who listens well, and has gone through pain relief with me and says she's willing to take things step by step with me to see what works and even suggested I come onto chat forums to get advice etc! I don't know if it's easy for you to do this but if your doctor isn't helpful, keep looking for one who is, remember we're all hear to listen, so any questions or concerns then fire away! I think as you say doctors don't know much about fibro so I think they just like to sweep it under the carpet but it seems there's a lot more research going into these days, it's becoming so common, I've bumped into three people this year who have it and my doctor says she's diagnosing more and more people with it so in a sense, it's comforting to know we're not the only ones and hopefully they'll come to a solution...!
Andrea I know what you're saying, pain never goes away, I was just thinking how strange it would be not to have pain at all cos we're so used to it but as you say it has it's "good" days and bad days! Fatigue is awful, do you get the shakes? I get shaky when I'm tired and become really clumsy! And it's sad when it comes to our children, I think out of everything, that's the toughest part! I would adore another child but don't know if I should go through it all again:(
Andrea it's strange you say you think your daughter has it because my daughter is only four and a half and she's dispaying the same signs and symptoms as me at that age and that's the age it all began with me, she's constantly complaining of sore legs! When we go out she's all excited then within five mins she's crying saying she has sore legs then falls asleep when she gets back home:( she seems fine and lively and healthy but these certain things pop up now and then, she's been checked and "everythings find" haven't we all heard THAT before:D
Posted 7/1/2012 12:07 PM (GMT 0)
*fine* even not 'find'
Posted 7/1/2012 1:27 PM (GMT 0)
Hi everyone,
Great post, Chili9. Vivaldi mentioned music therapy. I had read about some research that claimed that listening to an hour of classical music one hour before going to bed improves sleep. I found it really helps. My favorite is Yo-Yo Ma Plays Ennio Morricone. Watching high stress TV lessens my sleep quality. Fluid retention is terribly plainful and really messes up sleep so I have to watch salt. Oops, I'm sounding compulsuve about sleep- which I am because when I have a poor sleep night I have a bad body day.

Chili9, I hear the underlying frustration you have because the symptoms are getting in the way of your living life as you want to. The difficulty of dealing with the emotional impact of having FM has been a big interest of mine because it is what I have been trained in but also because so little has been written about it. When I was diagnosed I was able to find lots of info about dealing with symptoms and now forum like this provide even more help. I started keeping a journal to help me deal with the emotional part and about a year ago started writing a book. I decided not to publish but have started a blog for anyone who wants to better understand this aspect. Not for everyone, and I have found that most people have to put so much energy into managing physical symptoms that they don't have much energy for managing the psychological symptoms. But the invite is open.
Posted 7/1/2012 7:46 PM (GMT 0)
I asked my rheumatologist this, because on the day I had my appointment my symptoms were really getting me down. She said it can get worse or better, back and forth. Depends on each person and each situation. I try to go with the flow of it, but it IS incredibly frustrating. It gets me so mad and frustrated that I cry, but now I don't fight the tears, I welcome them because after I cry my muscles relax quite a bit and I feel relieved.
Posted 7/2/2012 7:13 AM (GMT 0)
I couldnt imagine having fm at age 4!! Honestly I dint know when my symptoms really started bc I am heavy set so I always thought everything was due to that. The 2nd rheumatologist I seen took blood told me my enzymes were too high then basically told me I didn't need to come back. Altho when I first seen him he was telling me he was going to change my meds and put me on some that would help more then never did it!! I hate seeing any dr about this bc they all act like I'm just trying to get narcotics!! Not once have I ever asked for any!! I understand about not sleeping!! I have had insomnia for more years than I can remember! I might fall asleep by 4 am then within 2 hrs I'm awake again. I never really fall into a deep sleep. I have extreme fatigue and my house suffers for it. My husband try's to be supportive but I can tell he doesn't really understand and I complain so much I really think that he thinks some of it's not real. I ry enjoy reading these forums!! It's informative, I have researched so much but there's really no certain thing that says do this and the pain will go away!! It's always on my mind bc I am always in pain.
Posted 7/2/2012 9:06 AM (GMT 0)
enajones,

Have you ever been evaluated for sleep apnea?  It sure sounds like you may have at least obstructive sleep apnea  due to your overweight status.  I tell you this, because I too, have sleep apnea and am overweight.  I also have central apnea due to the meds I take and my brain shuts off the breathing center and it can be very dangerous.

The fact that you never get good sleep and feel sluggish during the day, is a classic symptom of sleep apnea.  Do yourself a favor and get evaluated by a doctor.  You will feel so much better in the long run, I bet.

God bless you.

Lindaloo

Posted 7/2/2012 1:14 PM (GMT 0)
Chili, my Fibro absolutely got worse over the 20+ years I had it. {well, I guess I still do, just nearly in complete remission} And what was really threatening to take me down, was my severe IBS that went along with it.

That was up until 33 months ago. And had I not turned it all around, I honestly don't think I would be here now.

Peace,

Fish

Posted 7/2/2012 5:16 PM (GMT 0)
My fibro definitely comes and goes, my doctor did tell me the fibro pain and fatigue is like a roller coaster with the ups and downs, coming and going. I may wake up to a awesome day, or a bad day, sometimes its all day, sometimes its touch and go hour by hour for me. I may feel great and head to the store and half way through look at my b/f and say just take me home I am done or I make it through the store. I never know. But there are a lot of things I do not even bother with like my elliptical cause I know I will be down for 2 or 3 days.

But with the meds I have if I don't over do it, and pace myself, I have 4 or 5 good days in a row. Doesn't mean there is no fatigue or no pain, but I am not in bed all day. My bad days consist of me thinking I need to use the bathroom, but it is such a chore get and walk to the bathroom I put it off as long as I can. I dread the thought of getting up.

My whole body may hurt or one spot at a time, and the pain sometimes jumps from spot to spot and sometimes it does that all day long. Hence me thinking it has to be in my head.
Posted 7/3/2012 8:37 AM (GMT 0)
They wanted to do a sleep study and I chose not to bc I didn't think I needed to. And Dustinhunny, u explain fibro exactly like mine, except for where u have good days, I never have good days, I pretty much wake up hurting every day, also the pain keeps me from sleeping good. The pain will jump from place to place, it may be all over then in 5 min it's just in ur legs, or then ur neck and shoulder, it's crazy and very hard to plan anything!! I always feel like I'm a problem to my family bc of this, I can't stand too long bc the pain will get so severe in my back and legs that my meds won't help, not that I have good meds anyway. I have been on tramadol for like 5 yrs, the exact same dosage, it doesn't do much now. They told me lyrica will make me gain weight so I can't take it. I hope things get better for u, but I promise u it's not all in ur head. Writing things down like when u start hurting where ur hurting, what u were doing when it started and how it changed ur day/actions. Do that for a while and it will help u to understand it a little better and see what is some if the triggers that can bring on more pain. I think everyone who has fibro has thought when it first started that it was all in their head and they were going crazy!! I hurt for quite a while before I actually went to a dr, honestly I have never actually sit down and told them about all my symptoms, I seen a rheumatologist and really should have prepared for it, like where I hurt and for how long and explained it more bc he asked me where do u hurt I said all over, then he asked well is it mire in ur muscle or ur joints, I said well it's both and I couldn't explain most things and u felt stupid and he acted like I didn't know what I was talking about,
Posted 7/3/2012 10:28 AM (GMT 0)
Fish-

How did you turn it around?
Posted 7/3/2012 1:40 PM (GMT 0)
Enajones, before the meds I never had a good day! I know a lot of people on here had issues with savella, but it has really helped. I feel the same about slowing my family down though ! If I go I take my savella in am, and save my tramadol and muscle relaxer till we leave so I can go, but my poor kids even with that every trip has to be cut short ......We went to the zoo and for 4 hours there it took 2 pain pills and a muscle relax or, and bed as soon as we got home. I am lucky my soon to be hubby has gone to every Dr appointment with me and read on fibro etc and is there for me and understands. I have heard of some that don't have that support and that has to be very hard to deal with ! I heard after a yr on savella it doesn't work so I am hoping that is not the case for me... Out of all my choices it seemed like the safest one.
Posted 7/4/2012 5:51 AM (GMT 0)
Andrea11, I'm so glad you asked.

Please go back and look at some of my previous posts, most especially my first ones here.

I still can't believe {or don't want to believe} that I am the only person on the planet for whom my approach would work.

In a nutshell, its just a rediculous, hard-core, fanatical diet, and exercise routine. And the thing I have to stress, is that as great as this has worked for me, it took about 12-18 months to really reach a complete turn around.

I don't have any silver bullets, or magic tricks. But in those 12-18 months, I went from "praying for a fast, easy death" to "praying for as many more days of life as possible, to enjoy my "new life / body" :)

Best wishes :)
Fish
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