Is fibro progressive: - Fibromyalgia Acti...
Is fibro progressive
Hi Julie
I think it is mine has got worse over the last 3 years, maybe it gets to
A point then stops getting worse.
Every one is differient in the progress, some times it seems to go into
Regression, the specialists say that it does not progress, but what do
They know.
So don't worry yours may not get any worse, lets hope not, every one
Has differient story's to tell you I expect
Keep well love viv
Fibro is one weird illness a friend had her first baby suffering from fibro a couple of months later her fibro left her and has to this date some 3+ years not returned.
I pray this could happen to us all.
Take care God bless.
Bob
Hi Julie, I am a lot better than how I used to be, I couldn't go a week in between flares now I go months. I am not sure whether this is due to my medication or its just lying low for a while. There is light at the end of the tunnel...I lead a normal life in between flares and manage my pain with co-codamol!
Claire x
Mine has gotten worse once diagnosed at 25 I had 7 good years I had a job and my son then it got worse, and now arthritis has joined in, I,m in my 40s and walk with a stick and use a mobility scooter 
VG x
Unfortunately it is not unusual that, without effective treatment, someone with Fibro will get worse over time. However, Fibro is not a medically progressive condition where it would get worse no matter what and you can also improve, no matter how severe the Fibro is. A comprehensive and accurate diagnosis and getting effective treatment are key. To get these, most people with Fibro in the UK need to educate themselves and become expert patients.
Hi - Ive had Fibro for about 25 years, and never once been offered "treatment" . I am now in agony most days and nights, can only work 1 or 2 days and need to take 3 recovery days after. Ive had pain killers for other problems such as a broken leg and a bad back but never a Fibromyalgia related treatment. I would be interested in hearing about this.
Have you had a referral from your GP Summer. That's the usual first step, a referral to a Rheumatologist. That's how I got my diagnosis.
Perhaps you could ask your GP for a referral and this is when your treatment would start.
It sounds like you need help Summer, certainly with your meds to help you manage your pain and other symptoms. I would suggest that you make an appointment with your GP and take it from there.
Hope this helps. Take care. Please let us know how you get on.
(((hug))) xxx
Libs
Hi Summer
This first step I would suggest is to do some reading yourself about Fibro and how it is treated. The FibroAction and NHS websites are a good place to start as this information is evidence based.
fibroaction.org/Pages/About...
Then go and see your GP and talk to them about what you have read. If they are not confident treating your Fibro, then a referral is in order. If you see a local rheumy and they are not confident in treating Fibro (many rheumies are great at diagnosing it but have little to no experience in really treating it) then you can talk to your GP about a referral to a Fibro clinic, but you may well have to travel for this as they are few and far between.
I have to disagree with you on the fact of Fibromyalgia not being medically progressive my G/P who is a wonderful and remarkable Doctor says different and i have to agree with him especially as he is qualified to diagnose such progressive conditions, i do agree on getting the right treatment and managing symptoms before they get out of hand.
I wasn't meaning to sound argumentative or challenging to your advice etc i just see and hear so many people getting worse and little being done for those that get no relief,i luckily have the right combination at the moment but i am scared of becoming worse as i get older how can you make sure that your treatment is always the most effective without becoming more disabled before you realise it needs altering,sorry if i'm rambling hope you get my drift??? x
Please don't worry Della, we all have opinions as to whether our Fibromyalgia has progressed or improved.
The best thing we can do is what Lindsey says and that is to make ourselves expert patients and learn all we can about Fibromyalgia and all the meds and treatments available. Ask for referrals etc. Be aware of our changing symptoms and seek help and treatment for these. 
xxx
Hi Della, that's fine.
That's great your doctor has a good understanding of the impact Fibro can have. Most expert doctors with experience of Fibro agree that many patients get worse over time without effective treatment.
However, some people with Fibro are upset at being told Fibro is not progressive, but this is a good thing. It means that - unlike say progressive MS - the course of the condition is not fixed to get definitely worse and improvements are possible with treatment.
My Consultant Rheumatologist whose specialist area is Fibromyalgia and CFS/ME told me Fibromyalgia is not progressive (as per Lindsey's post above) and with correct treatment it can improve.
However, without effective treatment yes it can become progressively worse over time.
Hi yes that's kind of what i meant i mean if it wasn't progressive then why do so many sufferers become less and less mobile even having to use a wheelchair and other walking aids obviously a lot of people aren't in fact receiving the correct treatment which is appalling more needs to be done to combat this debilitating condition, i feel quite despondent about everything xxx
You are quite correct Della, many people with Fibromyalgia don't get the correct treatment or meds and as a result they feel their Fibro is progressive because their symptoms do get worse with the increased pain and stress etc. This is avoidable with the correct meds and treatments. xxx
Unfortunately, many people with Fibro do not receive and accurate and comprehensive diagnosis and do not have access to effective treatment options (not just medications). This is a big part of why becoming an expert patient is important - as GPs and most rheumies will have received little or no training in Fibro, you have to be the one with the knowledge pushing for treatments. Plus, there is a lot that must be done yourself (whether it's managing side effects, pacing or doing physiotherapy exercises at home).
i have 4 Consultants i have to use a zimmer frame or stick depending on pain level and outside i must use my wheelchair if more than 100 meters i am on a lot of meds from gabapentin morphine dizapem etc i scored 18 out of 18 for the fibro test so thats one confirmed but they think between them i have an autoimmune illness to but i ve been ill since beginning of year after 3rd miscarriage i am getting worse but i may have more than first thought so i hope fibro gets better at points as i know the pain main wont shift. love to u all vvvvv gentle hugs k x
Hi guys have had fibro from childhood diagnosed only about 7yrs ago ( good grief that long already ) i consider myself a bit of an expert! lol! and still learning i used to think it was progressive but i now believe that is not so. my belief is other normal aches and pains and illnesses and age i am 50 and menopausal have a detrimental effect on how we feel and cope i have other probs osteo arthritis of spine and knees is just one and i can tell difference which pain i have having the fibro exacerbates all these hence the feeling your worse also we get used to meds long term so these need tweaking occasionly i wish i had all this knowledge years ago as i would have more mobility now as instead of wearing myself out and not stopping till i physically could not move i would have paced myself better..exercise is definately the key but at a much better pace little and often to stretch the muscles avoid overdoing it as that will be your downfall gentle hugs fellow fibromites xx
Hello
What a relief if I can get my fibro controlled, with the correct medication,
And treatment, and become a expert , I may not end up in a chair or
With sticks.
I must admit that for the last two weeks I have been a bit better,
Until I got a cold and now feel worse than I have done for a few
years.
The trouble is that who do you go to if you want to get all the right
Treatment, if you have this you are lucky, my doctor is very good
But does not understand the condition, the specialist is not interested
So that all brings it's own problems.
Any way I will not give up hope there may be some one to help
Just got to find him or her.
There must be a lot of people who do not get the correct treatment
How sad is that they may have now been able to of had a life if things
Had been different.
Hugs viv
Viv if you haven't got a supportive GP or Consultant, seek a second opinion, change your GP and then get another referral to a different Consultant.
Sometimes it's a case of changing things to improve the treatment we get. We are entitled to this.
There are indeed many people who have GP's who don't understand and these people don't realise that they can change who they see to hopefully facilitate better treatment and meds.
Yes we tend to have to fight harder to be heard and understood, but when we are the results are potentially life changing.
Please see info taken from our main site about correct treatment and the prognosis for Fibromyalgia -
fibroaction.org/Pages/What-...
Fibromyalgia doesn't have to be progressive if we have the correct treatment and meds, unfortunately it is up to us in many cases to push for this.
Thanks liberty
It's a bit Hard I live on the Isle of Wight so a bit limited I could
Ask to go somewhere on the mainland
I was just concerned for all those poor people who may not of
Ended up in chairs or on sticks if they had been given the right
Care
For me I feel better than I have for a long time a few years in
Fact except for the cold it has made me go into a flare but even
With this I still feel better than I have for a long time.
I was not over weight, but I have been following, a diet
Without bread potatoes and sweats biscuits, I don't feel
So hot all the time, I don't know if this is the reason or
It would of happened anyway. But my pain is not as bad
Still don't sleep but its a start.
But with Christmas it's going to be had not to pick, it's going
To be interesting to see how I feel after Christmas, people
Always give chocolates don't they can I resist ? I don't think
So
viv, the other option is to find a GP that will work with you and then educate yourself AND your GP. I had a great GP a few years back (she's sadly now emigrated!) and she was happy to admit when she didn't know something but would also say "let me do some research and get back to you" and she did.
Thanks Lindsey
Well it sounds good, but we have a strange system here, I expect
It's to save money
If you want to see a doctor, I would have to phone speak to the receptionist
Who will not make an appointment but takes my number the doctor
Then phones me at home sometime during the day.
He then speaks to me on the phone, and if I am not an emergency
He will not see me, so I don't think he will wish to learn about fibro
He will give me a sick note over the phone if I am off sick, if I have
More than 4 weeks off he will then see me in the clinic.
I hear you say change your doctor, I can't do that as this clinic is the
Only one in my area, I could change the doctor in the practise but it
Would be the same. No other practise would have me as they are not
In my area
I hope this is not things to come I suppose it stops germs spreading
From one patient to another, we will see when the PCT are taken
Over by the doctors but wil it be better.
Its hard to have conversations with some one over the phone it's
Not the same,
There is so much to learn about fibro and I am learning lots all
The time. What happened to the days when doctors were suppose
To review your medication every 6 months,
Thank you for your help
Love Viv
I think it is not a true progressive illness like say Alzheimer's BUT it does get worse in a lot of people because we are not controlled with our pain leading to immobility and we are not helped with our muscle imbalances this leads to us not undertaking 'normal' activity an maintaining our fitness sufficiently leading to more muscle weakness more pain more inactivity- its like a vicious cycle- I think if we all had proper intensive support 24/7 when these problems first showed a sign then maybe we wouldn't become worse unfortunately we aren't and the pain etc is inhibiting us!
That is not a professional opinion just my own and I feel now that im getting worse but sort of stuck in a rut struggling to get better with increasing bad posture and increasing pain
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