What Fibromyalgia Syndrome Means for the Long Term
Fibromyalgia syndrome is a long term condition. Because it involves a collection of symptoms rather than a single disease process, the way it affects people varies widely.
Some people experience symptoms so mild they barely notice them day to day. Others find the condition severely affects their ability to work, socialise and manage everyday tasks. Most people fall somewhere between these extremes, with symptoms that fluctuate over months and years.
There is no single path that fibromyalgia takes. The outcome for each person depends on symptom severity, treatment effectiveness, and available support.
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Fibromyalgia can affect children and teenagers, though it is less common than in adults. The condition appears to be more common in girls than boys.
Research suggests that many children improve significantly or recover fully within a few years of diagnosis, though individual experiences vary considerably.
In one study of 50 children with fibromyalgia, 60 percent showed improvement over 18 months. Another smaller study found that around three quarters of children no longer met the diagnostic criteria after two and a half years. A further study tracking 33 young people over an average of 2.6 years found that most improved, and all showed some response to treatment.
These findings indicate that early diagnosis and management could potentially improve outcomes, but results vary from person to person.
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Working Life and Fibromyalgia
Fibromyalgia can affect your ability to work, though the degree varies considerably. Some people continue working with minor adjustments, while others find their capacity significantly reduced.
Reasonable adjustments in the workplace can help many people stay in employment. These might include flexible working hours, more frequent breaks, ergonomic equipment, or the option to work from home when symptoms flare.
Under the Equality Act 2010, fibromyalgia may qualify as a disability if it has a substantial and long term effect on your ability to carry out normal daily activities. This means employers have a legal duty to consider reasonable adjustments. The Access to Work scheme can provide grants for practical support in the workplace.
If you are struggling to work because of fibromyalgia, you may be entitled to benefits such as Personal Independence Payment or Employment and Support Allowance. Current rates and eligibility criteria are available on GOV.UK. Organisations such as Citizens Advice can help you understand your options.
Managing Expectations
Fibromyalgia is generally considered a lifelong condition in adults, though symptoms often improve with the right combination of treatments and self management strategies. Complete remission is possible but not typical.
Many people find that learning to pace activities, maintaining gentle exercise, and managing stress helps reduce the impact of symptoms over time. Cognitive behavioural therapy (CBT) has shown benefit for some people with chronic pain conditions. Psychological support matters, as living with ongoing pain and fatigue can affect mental health.
Support from GPs, physiotherapists, pain clinics and organisations such as Fibromyalgia Action UK can make a real difference. Connecting with others who understand the condition through support groups also helps some people cope.
While there is no cure, many people find strategies to help manage their symptoms and improve their quality of life. The condition does not cause damage to joints or organs, and it does not shorten life expectancy.
I couldnt even read the decision due to the way they had written it,it may of well of been in Welsh then in the poorly written english format that it was in.
So according to the dwp pip to them i have miriculously been cared of my health conditions. So they say. Not
Now i have a battle on my hands to be in receipt of what i should be entitled too. Yet again.
Non of my conditions will just disappear. Theres so much that they dont understand, i have problems washing and dressing even if i dont ask for help. I dont cook proper meals,i eat out. Even this they dont believe. I rely on my wheelchair to which they say i dont need.as im mobile.
So how is it that i now have to move from where i am as my ot has stated that i may get worse in years to come.
I have all the paper work to prove that fibromyalgia does and is effecting me yet the dwp are just to ignorant to see this.
I walked up the Aberystwyth Hill the other day as a challenge to myself, i got to the top but my legs turned to jelly and my feet and knees burnt with pain. My lower part of my body was on its way to giving way on me.
No one seems the pain,the frustration of the words not coming to you,words that was in your vercaberly once before are now lost. The things you used to be able to do but now take you longer to do.
It may not be cancer but its a cancer to your system.
How does or how would cbt help you manage your pain? Talking therapies, may help some but my brain is too clever for that,i know how it works. We can talk about how it effects us till were blue in the face,but where does it get us? It doesn't. Its just easier to just get on with it, do what we know we can do and what we cant has to be left.
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