I have been diagnosed with fibromyalgia but the last year or so my symptoms have been getting worse and I'm told fibromyalgia isn't a progressive condition and doesn't get worse you just have flare ups! But I feel like my in a constant flare up all the time! I had to give up been a barista last year as I couldn't do it anymore ,my wrist pain got too bad I couldn't do all the lifting that came with the job! I'm still in work part time at a petrol garage which is alot more manageable but I do miss my old job! Mobility has worsened I have to use a stick some days for balance and walking as some days my legs just won't work! I have had blood tests and a MRI but nothing has come back saying its anything other than fibromyalgia but I'm convinced it's not just fibromyalgia it can't be!
Is this fibromyalgia or something else? - Fibromyalgia Acti...
Is this fibromyalgia or something else?
Some of us I don't have flares, I don't, my pain is constant. Sometimes fibromyalgia can get worse because patients tend to move less in order to try and reduce the pain. This can make you stiffer, and your joints ache more because your supporting muscles get weaker etc. Then also moving less is generally pretty bad for your mental health, low mood makes pain pathways bigger so your brain detects more pain from the same stimulus. Fibro tends to effect my large muscles the most, so often thighs, if I stop moving it all gets worse.
I agree. I don't have massive flares as such, pain and fatigue is just constantly there. It's a constant balancing act between not doing too much but doing enough. I rarely get it right 🤦 x
I know what you mean, I don't do pacing, I have ADHD too and many other chronic pain conditions, being inactive hurts me more. I just do as much as I can all the time, I know it goes against all the advice but I prefer this approach than babysitting my various pains, it's no way to live. I have had these conditions for almost 30 years though so my life is still built around my conditions, I don't have a career for example, something has to give sadly...
I'm exactly the same re pain and pacing! I've also given up any chance of a career too. I try and been philosophical about it all but that's tough too 🙄 x
I really struggle to get it right! I either do do too much or not enough! 🫤
Me too 😏🤦 x
Hi Pinkgalinthelakes,
I'm sorry to hear what your going through, it's so difficult and i've wrestled with the possibility of it being something else too, i think because it's such a vague condition in once sense, and something most likely systemic and connected to other things aswell. It seems like there is no way that fibro develops, but rather multiple different ways that it might emerge - the uncertainty is a real challenge for me personally.
As far as i understand it's not progressive in the sense that it gets worse in an irreversable way, but you can go through periods that feel worse, and they can last a long time, but i also want to reassue you that it's also possible for it to improve.
There's no clear route, or set of steps to get you from one to the other and i found that one of the hardest things. Overall reducing stress in my life, reducing working hours, developing a better understanding with those around me have all helped it feel more manageable in the long run. It's been a lot of tiny steps that have led to more capacity in general, even though it's not dissapeared completely.
Dr's are not the best at narrating the diagnostic process, perhaps if they did we might have more belief in their diagnosis. What makes you think it's something else alltogether?
Sincerely hope you can find some relief
Hi yes I know what you feel like the amount of times I've said there must be something more wrong with me I had to give up work completely12 yrs ago after going down and down with the hours and now in a wheelchair out the house some days I can barely walk at all and I won't risk walking out of the house because it fatigue me and then I excruciating pain so I'm with you completely, but they say just Fibromyalgia and also I have CFS/ME my husband has become my carer but I think they mean It's not progressive, because you won't die of it, but it is does progress because the fact that You can't do things and you put on weight and your muscles get weaker and so you get worse. I've got high blood pressure because of it may have come in as I'm in my late 60s, But I think it because I'm carrying so much weight. I've had fibro seats for 25 years. And for the first 10 yrs I coped reasonably, well, but then things went start going downhill. I then went from a stick with a seat to a Walker with a seat to a wheelchair, and now I use a powered chair progressively get worse take care 🙂 🙃
I think the lady above is right, is that fibro makes you move less, put on weight maybe and we get older so there's are new complications...Keep moving if you can and try and manage weight gain...
It is very hard, I know?
Exercise can be difficult to squeeze in?
I try and walk to an errand+add an extra walk back to achieve more steps but only 3/4 times a week! I can't manage every day but everyone is so different???
Fasting is the only way for me to lose weight! I only eat breakfast at lunchtime!!
Aging is my most difficult factor to handle with knees that ache terribly!!
Maybe arthritis?
GP says fibro... such a dilemma if they ignore your knowledge!!!
Gentle hugs to you.
I hear your distress... it sounds so awful for you...
Wx
My additional problem is poor mental health... it really affects everything...However, today we hv sunshine and I've actually got an appt to speak with my GP!
Wonders will never cease...
Wx
Ur email attracted my eyes due to struggling to move legs. Mine was a quick onset over 6 weeks . With sudden physical weakness to whole body. Like shakines s when walking then needing a commode upstairs and downstairs and my male carer helping. I don't like a man helping toileting.
I don't know if it's crushing syndrome as I'm coming off steroids.
I can barely walk four steps before my body gives in🙁😯😖😕 I've got the council coming tomorrow with aids and to discuss things.
Sorry brain fog hugs good luck xxxx
I too suffer with fibromyalgia and have been for over 15 years and can definitely say its got a lot worse over the years some mornings I struggle to get out of bed but when it flares up I just can't function and deal with every day things such as making myself a sandwich at lunch time. If it wasn't for my amazing wife I don't know what or how I could manage simple tasks. So I would say it probably is your fibromyalgia getting worse its a horrible condition to have and wouldn't wish it on anyone. I hope things improve for you and you have my heart felt sympathy stay strong
Yes, sometimes it looks like it is getting worse but be sure you are investigated for other stuff that, with having fibro. often is not looked at because they put everything in the fibro bag. Worst, it is invisible!
I was diagnosed with fibro 20 years ago. I had an appt. in rheumatology to see what kind of arthritis. I had so much pain in joints and muscles and he discovered that I had Fibromyalgia, he told me that I was not crazy because I had all these different joint pains that seemed to come from nowhere. I used to be very active and in the last few years, I had a real problem functioning physically. So knowing it was fibro I could start a program. I did not know much about that weird crazy condition. I went to different pain clinics, chiropractic, and physiotherapy which was the best for a while. I had a hard time with medications I tried all the ones that were supposed to be good for Fibro. At times I feel that it is progressing but they are more flare-ups that last longer and harder. I have arthritis too, the aging gets me there so hard to know which one. I found talking to people with Fibro that in times they do develop arthritis and other ailments.
I understand how you feel as I too have the same problems. My mobility with fibromyalgia and Osteoarthritis in the knee. To help me, I brought a cheap walk pad they are small and easy to use. and now do slow walking exercise to keep my muscles strong its painful but my balance has improved and I also do lots of stretching to reduce my pain levels. I too walk with two sticks.
To support your pain more use a ten machine while resting or walking .
Look on YouTube for chair exercises as you need to stay flexible.
Look at your lifestyle and look at your diet because you could be eating food that makes you worse. Lose weight of you need to . Wear very good support shoes.
Use magnesium spray so good for pain. Rub your muscles with warm oils . This help pain relief as the muscles relaxes more.
Check your vitamins intake . Vitamin D Is key and Zine and magnesium tablets.
Use heat on your muscles when flare ups are bad.
Buy a heat pad from Argos or Amazon.
Talk to your GP about getting more support in living with Fibromyalgia and ask to be put forward to the pain clinic or courses living with long term illness.
Share with your GP about any new symptoms as it's not always linked to fibromyalgia.
Look at the side effects of your Drugs you are taking as they could be making you feel worse.
Read leaflets and review with your doctor.
Research self-help benefits to understand what your body is telling you.
Flare ups and your body. research self-help understanding therefore research self-help/mindset .
There is great information out there . 👍
The journey I have been on has been a long one however the changes I have made gave me a better lifestyle and in more control of my symptoms and anxiety I felt. 🙃
keep pushing against these symptoms in a different way and you will see results. If you ever feel like you need to talk Register on talking therapist website in your localcommunity and they will call you and talk through anything you need support with. There no judgement just support. Good luck and push forward you can make changes.
Kick back at this illness because you can .
God bless xxx
I’m thinking the same to I have doubts but the doctor said to me that her concern is for me is if the pain gets worse this doctor is lovely she is and I wasn’t diagnosed by her but she did say I have msk in my neck and another doctor felt it and said the same, and when I saw the neurologist about my pins and needles in my feet he asked about all my symptoms I think I misdiagnosed my symptoms as I said I have pain all over but I don’t it’s my neck only and a headache at the back of my head feels heavy, I’ve had test date test all ok but I’d like to get more private test like check for other illnesses and get an xray cheapest option
Sorry you are not getting any answers to this new pain. I was diagnosed with fibromyalgia and CFS/ME and company (all those other diseases that tend to go along with it). Sjögren's Disease, GERD, IBS, hypothyroidism, thyroid disease, migraines, IC, UC, Gastroperisis, arthritis, depression etc to name a few. These other conditions do cause other symptoms that go above and beyond the “normal” fibro pain. Balance problems I noticed in 97 while doing yoga that I could not do the tree pose in standing on one leg. I was just involved in a Parkinson’s study (no I don’t have Parkinson’s but my mom had a Parkinson’s diagnosis in her final years of her life. She had Alzheimer’s for 8yrs. The study is taking people who are healthy, have Parkinson’s or has a family history of Parkinson’s. Anyway just got back home from the study and the doctor recommended me seeing a “movement disorder neurologist” because of some findings like balance, eyes movements are not smooth. She said I had “chorea” which is a symptom. So you mentioned balance problems also so wanted to throw this out there. Not saying you have any kind of disease but you can research it and go from there. I didn’t know that there was such a specific neurologist who goes above and beyond regular neurologist. It may just be a fibro symptom but it could be something else which can be treated rather than “live with it”. I guess technically fibro isn’t a progressive disease but I don’t agree with that for it brings other illnesses into the picture which tend to cause more symptoms. I have always said it doesn’t shorten my life span just decrease the quality of life. Continue to reach out to this group for all the members are full for experiences when traveling done this fibro journey. May God bless you and give you strength.🤗💕
I do sometimes think Fibromyalgia is used as a blanket for GP's to cover symptoms they can't categorise. That's not to say that people aren't in genuine pain and turmoil, but Fibromyalgia symptoms can cover so many other conditions. If your gut says it's something else, instead or in addition, stick to your guns. I FINALLY found GP who read ALL of my notes and investigated properly my Fibromyalgia is now Fibromyalgia, Osteoarthritis, Chronic Pain Syndrome, Osteoporosis and degeneration of the spine. Meds are better, sleeping more than 2 hrs at a time, so there is light, however long the tunnel is
Stick to your guns, be pushy. Hope you have a positive outcome 😊😊
Cfs possibly fibro also. Claimed esa,failed medical assessment..what do I live on? I'm single, live with my teenage daughter.. So worried..
Fibromyalgia and diabetes
Is Fibromyalgia something else?
fibromyalgia 
WHAT IS FIBROMYALGIA ?????????????
