Is Fibromyalgia a progressive disease?

[sophie22]

I have had fibromyalgia for 14+ years now and over the last few years it is getting worse by the day. I get very little sleep if any and when I do I awaken to instant all over pain and pins and needles in my arms and fingers. I have a constant feeling of pain in the bones of my legs and my pelvis feels like a block of concrete. I am tired and have sudden bouts of fatigue, I can literally fall asleep on my feet. I have regular migraines and feel like I am dragging myself around. I continue to walk but with great difficulty and not very far before I need to sit down. As I have said in past posts I was extremely active and had a good career. Forgetful? Very! I am very sensitive to drugs so pain relief is minimal, cocodamol with low dose of oromorph when things unbearable which is becoming daily especially at night when I try to sleep. Unfortunately even these drugs which I only take at night are aggravating the Asthma which I have had all of my life. I was in tears at my last doctors appointment , he said there were no options left due to my intolerance of drugs, when I asked why I was getting worse and if fibromyalgia was a progressive disease, he blanked me and dismissed me with "this conversation is going to get us nowhere so there is no point having it" leaving me bewildered and upset as I just can't why no matter how careful Iam or how much I look after myself I continue to be in constant pain and am becoming housebound. I have always cared for myself, not drinking or smoking, kept my weight steady until the last five years when it took on a mind of its own, I attended the gymn three times a week went swimming and walked the hills at weekends with my family, I am a vegetarian. So I think I have a right to know why after a lifetime of healthy living am I in such an awful place? I know fibromyalgia was triggered by a back injury and yet I am constantly told my back is ok just normal degeneration for my age (57) is it wrong of me to want to know the how and whys and what the future may be? I often feel so alone in this and the lack of the health professionals understanding of how this disease affects peoples lives, its devastating! I often wonder just how much longer I can take this? Of course I can't afford to use alternative theraphies as I live on a widow's pension and am awaiting the added joy of a PIP assessment, which is what my GP suggested, I told him I was on a low income and he said that was nothing to do with him. Now I am even worried about going t the Doctor's, even if I do, what can he do, I gave him a download of the information off this site. I seem to be at a dead end, and I have been feeling very poorly this week, have been having chest pains, think it's stress, but can't stand the thought of another rebuff. Sorry for the rant, hope you are all as well as can be. I am having the granddaughters tomorrow evening and going to a healing service in the afternoon, that will keep me going for the weekend. I do try to find the good in my life and there is a lot, just wish I could get some relief from the constant pain. Gentle hugs xxxxxxxx.

[TheAuthor]

Hi Sophie22

I am so sorry to read that you are feeling worse by the day, and I genuinely hope that you can find some resolution and relief to your symptoms. You have asked a very interesting question, and I do not really know the answer if I am truthful.

There was another post recently about sudden progressive and worsening of symptoms, so I have pasted you a link to it, so I hope that you find it useful:

healthunlocked.com/fibroact....

I want to wish you all the best of luck my friend

Ken x

[Hidden]

Hi Sophie. I am sorry that I have no answers for you. I just want you to know that I hope thing can be sorted soon. Have you thought of pain clinic, they may be able to come up with something after all that is what they are good at.

Sending lots of hugs sue xxx

[Hidden]

Hi

I think for some people it gets worse, I wonder if you

Have been tested for MS it's very similar symptons.

For myself I go up and down, some times I think it

Has almost gone just a bit of pain, then it comes back

With a vengeance.

worry makes it worse I think but it's hard to say don't

Worry as it's hard not to.

I hope you get more help maybe you should change

Doctors, ask to be referred to the pain clinic in your

Hospital he can't say no to that.

Hope you feel better soon

Viv x

[Shazzzy]

Hi sophie, really sorry to hear how bad things are for you just now. I have had fibro for bout same amount of time as yourself and yes it has got progresively worse, especially last 2/3 years. I have had athritis since age 14, now 50. Despite that i wss very active too, swimming, yoga, exercisr classes each week, and cycling at weekendd with family. Last 3 years migraines have gotten much more psinful and more frequent. After speakingto many women about this, it seems like it will not likrly improve til after menopause. My migrsines are hormonal, are yours same ? I just seem to stagger from migraines to fibro psin and athritis, have tried and discounted most drugs also due to intolerance, recently had the fun/ confusion of trying gabapentin, felt almost suicidal between that an migrsines. Propranolol was great for pain/exhaustion but made asthma bad, felt good apart from fact i couldn't breathe! So i know what you are going through. My lifesaver has been the local centre for integrative care, formerly the homeopathic hospital. My physio wrote to my doc advising i go there or psin clinic. Luckily i got to choose which one and have been attending for last 10 months. Here they have physios, different therapists, bowen and acupuncture as well as tai chi and meditation classes. As i was quite housebound and had so mamy problems i was taken in as a an inpatient. Their aim is to get me to point i can attend outpatient classes and have more control over my oen life. What i am trying to say is talk to anyone and everyone in case they can suggest somewhere that can help YOU , gps not really been much help in my case. You could try looking up clinics etc online and just ask people who have any chronic illness what they do, where they go for treatment, local charities like red cross etc, have info like this, some hsve therapists who do home visits for massage etc, i go to local college when able and get massage for £5, it really helps with muscular pain and relaxation, and helps sleep. I think you are perfectly entitled to ask for a prognonsis, your doctors attitude was appalling, this is your life and you deserve to know, would they say such a thing to a cancer patient ? I am concentrating on meditation and relaxation cds to help with pain as consultant said too sensitive to most tablets other than tramadol/ibuprofen and neurologist said hardest type of migraine to stop. Wishing you all the luck in the world, keep trying, you will find some relief somewhere. Xx

[sophie22]

Hi Shazzy

you seem to have similar problems with sensitivity to drugs, my GP took me off tramadol one day I had been on it for 4years and the side effects were doing more harm than good, I went through cold turkey, now my pain is not managed. The pain clinic I went to Last year was so dismisive of fibromyalgia even my daughter who was with me got annoyed, she could not believe they took me off all pain relieve and then said there was nothing else they could do about managing the pain except send me to see a pain psychologist, that was 7 months ago, I am still waiting for an appointment, when I phone they say they do not know how long it will be. I am now waiting for a rheumatologist appoinment, Dr says a long waiting list as she specialises in chronic illness and fibromyalgia and has a specialist team of physiotherapist. This all sounds good, except I am suffering now, and need help now not next year. My migraines are daily and are caused through spine pain especially inmy neck, I had the menopause years ago as I had a hysterectomy at 30. It seems to be a lottery a to were you live as to what is available and how long it takes to access it, Cheshire does not seem to be particularly set up to deal with chronic pain, we get sent out of the area, not good when you are in pain and have no transport. Wish they realised when you are suffering you need help ASP not 12 months down the line. Just feeling sorry for myself at the moment, feel so restricted, its not good for you sitting at home wrapped up in pain, but I am afraid to go out as pain unmanaged and I need to use public transport, being on a low income and waiting so long for PIP assessments does not help, I have been waiting since last September. Everything seems to be such a mess and really all chronically ill people need less stress but everything is so stressful, it is a nightmare. Thankyou for yout answer, will try and find out what most paople do, but it seems from what I know they go private around here which is not an option for me. Have a nice weekend, gentle hugs xxxxxxx

[Hidden]

Hi Sophie

Sorry to hear your having such a rough time of it at the moment I'd been wondering how you were as I've not seen you for a while.

I don't know why your GP cowered away from answering your questions in the manner which he did and can only say how sorry for you I am. It is important to keep stress as a minimum and I agree that his actions will have not helped you with that I personally think it is important to try to speak your GP again when you feel a little stronger to ask again. You do have a right to know what is going on and the what's, why's and how comes.

Whether Fibromyalgia is a progressive disorder or not is a debate that often crops up I personally think mine has been but in combination with the lack of treatments and all the other health problems to boot!!

Apparently, Fibromyalgia by itself is noted to be treatable so it doesn't get worse whereas if it were progressive it would get worse no matter what drugs and treatments you take.

It is also down to personal opinion and what your health problems are as Fibromites we all differ but are the same it would be difficult to study I personally think. It is my thoughts that a study of such magnitude would require a collaberative approach involving a Rheumatologist, Neurologist, Pain Psychologist, Pain Consultant, Pain Nurse and a Re-hab team. Also a large subject pool, number of Fibromites willing to be studied over a long period of time and I feel that it would be difficult to be consitsent due to the scale of the project. However, we can all help by raising awareness of our illness and helping charities such as our FibroAction Team to raise awareness too and also to bring the most up to date research for us to access and to raise funds for new research studies into Fibromyalgia.

This is an interesting Post from the Past discussing whether fibro gets worse as time goes on with many differing viewpoints which I thought you might like to read.

healthunlocked.com/fibroact...

This link takes you to patient.co.uk and a professional article discussing Fibromyalgia (Fibrositis) which I thought parts of may be of interest to you as well as the references and further reading section.

patient.co.uk/doctor/Fibrom...

I sincerely hope your symptoms ease for you soon Sophie and send FibroMonster busting fluffies to help

I do personally believe my fibro has been progressive this last 5-6 years due to lack of treatments etc and the other health problems which run alongside my Fibro. One day someone may discover the truth!

xxxsianxxx Remember International Awareness Day Monday 12th May

[sophie22 in reply to Hidden]

Thank you Zeb22, found the articles very interesting, some of the assumptions made me smile, like lack of education? My Fibro has gotten worse over the last 3 years despite my best efforts to stay active. I do wonder if it is the Fibro which is causing the deterioration or the constant lack of sleep. Hope you are well, have a lovely weekend. xx

[Hidden in reply to sophie22]

That's a good point Sophie I lack sleep also

I am getting there but am still smiling

Hope you have a lovely weekend too xxx

[Shazzzy]

Hi sophie, what pain relief were you on when pain clinic stopped them, did you want this to happen? I just remembered arnica, this is s homeopathic ,medication available at healthfood shops or online also good for pain. I have also experimented with food, cutting out most white carbs, bread pastapotatos etc, helped ibs immensely. Also cut out deadly nightshade veg, white potato, peppers, tomatos etc lessens pain. Nothing i do appears to halt the dreaded migraines though, i will keep looking. Sounds like it will be really helpful to see the rheumaologist, you csn alwsys contact them yourself and ask to be put on cancellation list, you may get in a bit sooner. You csn also ask for physio while waiting, your doctor really needs to offer you something to help you deal with this, oh just remembered saunas helped me a lot too, i just went to local swimming baths, you evenqualify for a discount. All the best, sharon.

[sophie22 in reply to Shazzzy]

Hi Shazzy

I was on Tramadol for 4+ years but the side effects got so bad that a new doctor I had not seen before stopped them. I have tried various combinations since but they all aggravate my Asthma. There does not seem much left for the GP to do but he could at least be civil about it, and answer my questions Hope you are well and have a lovely weekend. xxx.

[mitziblue]

Sweetheart you sound like me, Please go to pain management, it makes a world of difference!!! Praying you get relief soon sweetheart!!!! xxxx Mitzi

[sophie22]

Dear Mitziblue

I have been to two pain clinics in our area and neither is very helpful unless you want morphine. They do not have a very good reputation, not many return for a second visit from what I have been told and my experience seemed to confirm this. Have a lovely weekend. xxxx

[Kirby]

Very sorry to hear, Sophie. I often wonder if Fibro is like MS as another member of my family has Primary Progressive MS whereas others have relapse-remit and secondary progressive. It seems to me as if something similar is going on with Fibro but that's just my thought.