Fibromyalgia Community
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1069644 tn?1276928863

Is Fibromyalgia progressive?

I was told that fibro was not a progressive disease but I feel like my symptoms are getting much worse as time goes on. I do still have some days that are better than others. I was diagnosed a few years ago and it is getting harder and harder to function on a daily basis. The difference in me this year compared to last year is frightening. I had pain all the time last year but managed to still work and function through it all. I am now at the point where I
don't know how I can make it through another 8 hour shift. I have missed so much work this year and when I do work I come home and immediately have the heating pad and ice pack out for the rest of the night. The pain is everywhere...(neck and shoulders are the worst). I am on cymbalta 30 mg, diclofenac and percocet 4x day. Is there anything else that I can do to help the pain? Will it ever get better or will it continue to get worse? I'm afraid I will end up an invalid, feel pretty close now! Any insight will be greatly appreciated. I guess I still don't understand how this disease works. Thanks for listening.
7 Responses
Avatar universal
I am sorry you are going through this. I had to stop working 6 years ago. I worked full time as well and I was suffering daily.  I didn't tell anyone at work but I too began missing work.  I was never that kind of person so it was not only hard  pain wise but I had such shame over feeling so awful all the time. I was in my early 30's at the time.  

Then in 2003 I was injured in a car accident and had 5 surgeries in less than 2 years. My career was over and I HAD to stop working. The fibro was so out of control!
As for it being progressive it all depends on what you doing. If you are able to take care of yourself meaning rest often when you get flare ups, eat well, drink a lot of water and get on a regime of either medications or natural products or both that work for you it can help you manage it so it doesn't not seem so out of your control.  

For me, one big trigger for my FM symptoms is stress. Which we can't avoid in daily lives but if your job is adding a lot of stress or you do stressful work it can really take a toll on your body.  People don't often get ill or worse from fibromyalgia, it's underlying conditions that normally do that because with fibro you have a harder time fighting things off.  With me and i believe most fibro people our immune systems are compromised. When I was working I was so fearful that I wouldn't live to see my grandchildren because of how bad I felt. But after I got a plan of action in place I realized that was not true.  
Now for your medications.  Cymbalta is a great option for FM, it helps with the pain and any sadness or depression you might have.  Which is not uncommon with fibro.  Diclofenac per my doctor should not be taken more than a month or two, He said it is extremely hard on the stomach.  I would talk to your doctor about it.  My doctor in stead gave me Voltaren-topical cream. You get less medication in your body but still anti-inflammatory affects.  Percocet is good for pain. I take it for "break-through" pain.  
I am not a doctor but I personally think you are not on the right medication to manage your pain. I have talked to people in this forum who work and take oxycontin or wear a fetanyl pain patch. I take oxycontin 40mg daily for the pain and percocet for break through pain.   Everyone is so different so talk to your doctor,I don't know if you want to get in to taking narcotics but if you are in a lot of pain and it's not managed it can take over your life.  So have this discussion with your doctor. If your pain is managed properly you will need less percocet and hopefully they will take you off the Diclofenac. But that's up to you and your doctor.  While taking the diclofenac taking an enzyme with it will help protect your stomach.  

There are other medications for FM like mirapex,even celebrex but all come with side effects so discuss with your doctor and look up side effects.
Another thing that works for me and I talk a lot about is what you eat, drink. Foods really affect pain.  I learned that the hard way.  Sugars, bad carbs, white potatoes, white rice should all be considered.  
I also take something called Essential Enzyme, enzymes help us digest our food. A lot of FM people have digestion problems and I believe for me  my pain is worse when my stomach isn't working properly and I have digestive issues. I take one with each meal.  I also take immune boosting supplements like Astragalus and Grapefruit Seed Extract.  Look them up online, they have saved me.  
You can manage your symptoms. I am not pain free by any means, I woke up this morning in so much pain but I begin my regime and I pray.  I also like getting online here and hearing from people like you and want you to know there are so many people on Medhelp who care and have great advice. So keep in touch, take care of yourself and don't be afraid to reach out and say when enough is enough.  
230948 tn?1235844329
i have fibro no underlining illness not that they found anyway and i found i went from able bodied to disabled in 2 yrs to the point i wanted to die because of the pain! i was bedridden 3 mths not fun i then went onto fenntanal patches ( morphine) and slowly i have reached a steady up and down i call it i spend half the day in bed or resting building the energy till my kids come home by taxi they are 11,8,9 and i am a singal mum i have good days and bad days which sometimes extend into bad weeks i have tried changing my diet to a ph balanced one, all types of drugs, natrual remedies tigar balm a good one,acupucher,chriopractor,osetopath, none worked recently hydrotherapy worked well but had a big flare afterwards and back to square one again! starting triggar point massage recently helps abit.
you have to pace and pick and chose what you do and even when a flare lands you flat again you have no other choise then to start again.

stress is a big thing and i cant get away from that being a singal mum and maybe you will have to chose to cut your hrs or give up work if it means a better exsistance of life.

i would say it is progressive in some only because i feel there are different strains of it like in MS. some  fibro patients work some get hit so bad by it they are floored some get better (they say if you recover in 2 yrs you have a good chance of not relasping) others like me have to use wheelchairs,scooters walkers pain killers cant work. I was so active i was a working mum jogged 5 miles a day used to horse ride and now i cant walk more then a few yards un aided as use crutches its odd and one day they may find out how to treat it untill then we have to reasearch ourselves find out what works for us. good luck keep in touch.
428506 tn?1296557399
I think it is a matter of what the doctors can track, which is obviously not the same as what the patient experiences over time.  Since it is not understood what causes fibro or what damage it causes, the effects of fibro can not be measured or monitored with time.  Therefore, it is said to not be progressive.  However, as you can read from patient testimonials, the day-to-day symtpoms and quality of life can be affected in a way that worsens over time.

It's not unlike the old question, "if a tree falls in the woods and no one is there to hear it, does it make a sound?"  To patients, yes, it is progressive.  To doctors who aren't there to hear or monitor the "sound," it is not.

That's my understanding and opinion of the situation.
975514 tn?1324997938
I completely agree with wonko. If we go by the "textbook" case of Fibromyalgia then I would have to say, no, Fibromyalgia is not progressive, but everyone's experiences with the disease seems to be very different than the "textbook."

Some people are able to overcome much of the pain and live symptom free for many years by using good management techniques, which can include nutrition, medication and exercise programs, while others may not improve using these same processes. FM patients also may live with co-occurring conditions such as Lyme disease, Degenerative Spinal Conditions, Rheumatoid Arthritis or Lupus just to name a few as well. These aspects definitely have an impact on Fibromyalgia.
Avatar universal
My heart goes out to you. You sounded so active originally like I was.  Did you have an accident or can you pin your getting fibromyalgia to a specific experience?  I was car jacked and injured both physically and emotionally, I think that is brought mine on.  Your kids are beautiful.  Everyones comments here are great and exactly right on!!!! Annette
230948 tn?1235844329
hi have messaged you on other post. apart from an earlier shoulder injury and a 3 yr abusive relationship i was fine i had lost both my parents and am an only child gone through a divorcee but then dont half the people we know have a story like that!
It started in jan 2007 in nov 2006 i had a head on car collision caused me to have whiplash was going 40 mph and although i had treatment by jan was still no better dizzyness eyes jutting memoery problems word recall probs, weakness in my limbs hard to climb stairs and get out, then feb time i did a long shift i hurt all over was disorintated thought it must be flu pushed through but the next day i rang in sick this pain went allover my body and soon i could not move not even lift a fork to my mouth i was in agony my muscles were like concrete, i was seen by a neuro and put on amtriplyine and ordered test i got abit better and when all test come back end of oct 2007 i was discharged, in early 2008 i suffered alot and by feb i was bedridden in so much pain again more tests where ordered and again i was dischagred and refered to a rheumy who said i had fibro and said it was a disorder of the centrel nervous system as they tried to get my drugs right i suffered more and had a psycotic episode so they stripped me back of my lyrica then the requip/miripex and just left me on the fenntnal pain patch (morphine) since then i have been on baclofen for spasms which works well. Like i explained in other post i suffer diffent pains bone type pain nerve pain and a pain that washes over my whole body rending me inmobile this is the worst as in them times i cant even bare noise or light and remain in a dark room rocking to help the pain and hoping it will pass.

i agree with the others comments about is it progressive to us i feel it is to the drs i feel it is not.
1069644 tn?1276928863
Thank you so much for your input. I am calling my doc tomorrow. Not that I want anyone to suffer from this disease, but it sure helps knowing I am not alone or crazy. Sometimes I just want to give up. I can definitely make some improvements in my diet and will talk to the doc about the diclofenac. He really seems to care and is willing to try anything but sometimes I feel like he just throws meds at me. I hate taking pain meds but as you know sometimes we just don't have a choice. Thank you again so much for responding.

UK2, thank you as well and I am so sorry you have had to deal with so much. I hope you find some relief. I can't imagine 3 kids, I only had one and he is grown now, well sort of :-) 19 going on 30. Being a single mom is the toughest job but the most rewarding. I truly hope you get to enjoy them even though you are in pain. Good luck with everything.

Thanks to everyone who took the time to respond, I greatly appreciate it.
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