Doctor visits when you have Fibromyalgia

I find it interesting in the Fibromyalgia community the varying frequencies that people visit their doctors. On some occasions these appointments shouldn’t really be necessary. Let me explain my thoughts.

My Fibro Diagnosis

As I have mentioned before, on my journey to diagnosis my GP sent me to see a consultant rheumatologist. He was interested in the way I walked and he talked about my aching leg muscles; he gave me some exercises and literally said he didn’t need to see me again because either I would do the exercises and be fine or I wouldn’t do them and there would be no point seeing me again to repeat himself. He also stated that he didn’t believe in Fibromyalgia when I tried to explain the other symptoms.

Initially, I came out of there feeling amazing. Thinking, wow, some simple exercises and I would resolve all my problems. Then with Michael’s support I did the exercises, and I realised that something was wrong. After a few repetitions I was is serious pain. I am not talking about the ache you can get after a long walk or a gym session; I mean pain. Fitness instructors have always said you should stop if exercises hurt.

It was then I realised that the rheumatologist had completely ignored the rest of the spectrum of symptoms I told him about. At my next doctor visit I explained what had happened to my GP, and she apologised for what he said and was initially going to re-refer me to a different rheumatologist. A short while after this she called me to tell me there was a change in legislation and they no longer needed a specialist to diagnose Fibromyalgia and she could officially diagnose me herself, which she was happy to do based upon my symptoms, their longevity and the test results she had received (when testing for other conditions)

Doctor Patient Relationship

My GP was open and honest with me and when Fibromyalgia was on the table and admitted she didn’t know a lot about it, but would look into it. I also found the Fibro Bloggers Directory where I discovered so much information about Fibro and found other people who had gone through exactly what I was experiencing. Stories of doctors visits varied but then it is a world wide group. Not everyone’s story was exactly the same because the syndrome has so many symptoms and effects people differently but the overarching change of life was common to all.

When treating Fibromyalgia there is only so much the Doctor can too, the day-to-day experience varies and what works for one person doesn’t always help another. Much of the “treatment” is lifestyle changes, for instance, avoiding stress and pacing yourself. There are alternative therapies that can help too, essential oils for headaches is one effective for me. In a nutshell what I am trying to say is the Doctor is helpful when I need her but she has a limited understanding of Fibromyalgia and no experience of living with it.

There are plenty of people out there going through this who can provide helpful suggestions from personal experience. In the same way a Doctor who has never been through labour can have a sound theoretical knowledge but no personal experience. Add to that the fact that childbirth has been happening for centuries, meaning it is researched comprehensively. Fibromyalgia has less spent on the research than male pattern baldness, according to one article I read about a year ago. I’m sure you get my drift.

Doctor’s visits for financial purposes

I have recently put in the papers to claim Personal Independence Payments. I did this with much regret and even feel slightly embarrassed that I have had to. At the beginning of the form there is space to write all the medical professionals involved. I see only my Doctor because she provides the medical help I need and I do everything I can to look after myself the rest of the time. I understand that there will not be a barrier to being accepted for PIPs because I see no other Doctors or specialists but they designed the form in such a way that suggests it. It could just as easily had a space for my Doctor and then said “Any other medical staff” suggesting that one Doctor would be sufficient.

NHS Resources

In the UK most us are proud of our NHS, what it represents and everything they do. However, we also know that we stretch the resources to their limits. The NHS is struggling to cope. Perhaps I am making a leap but I can’t help feeling that the benefit system exacerbates this. This is not an attack on the DWP there are far more excellent staff there than the rogue few we read about in the tabloids. More a questioning of the policies they must enforce.

The cost of benefits

Payments made to sick people (living benefits or PIPs) are low, far less money than minimum wage and realistically not enough to live on especially when you have health problems (that does not even cover that if you are in a relationship with someone who works, after a short time you no longer receive living benefits, just a contribution to your state pension.) A Doctor’s medical certificate is not enough proof to maintain these benefits though. They seek further opinion, doubting the initial doctor and tying up medical staff.

With PIPs a Paramedic, nurse or other medical practitioner can do the Assessment, who may know little, or nothing, of the condition they are assessing you with. Not only is all the extra time taken up but also the administrative processes it requires.

Why am I sick or disabled?

First, I am not naive I know there are people out there who are not as ill as they seem and actively play the system to avoid working. You can read my post Fibro or Faker signs to look for, for my thoughts on this. Most people who claim sick benefits and/or PIPS are ill or disabled though. Many, with chronic illnesses, have already lost great chunks of their life, independence and dignity.

We live in first world countries where the normal is to be productive and earning a living, when you can’t do this, society, however unwittingly, treats you like a second-class citizen. Considering this I feel that somebody who would try to fake this way or life, probably has a degree of mental health illness, anyway. Who would want to fight to become a second-class citizen?   

I am still a productive human being

Given what I have said I, like many others with Fibromyalgia and other chronic health conditions bare a burden of guilt. We try to do what little we can. When I am well I make greetings cards, unfortunately sometimes family members have not received one because I have not been well enough to make it. This makes me feel bad and each year I try to start earlier.

I work on my genealogy and on WikiTree; I piece together many branches of my tree to assist others with their research. Again, there are times it gets abandoned when I can’t focus or even sit at the computer. My productivity, including writing this blog comes in bursts at unpredictable times. In between there is a world of pain and finding distractions to make it through the day to hope tomorrow will be better. Each year is progressively worse.

I am scared

That I am even writing this is because I am scared. I have read about many people with Fibromyalgia who get rejected for or lose their PIPs. If there was any possibility, I could return to being a first-class productive member of society I would in a heartbeat. Since my entitlement to living benefits ceased I have relied on Michael for everything. He bought the commode I rely on and returns home from his productive day to empty it.

I have lost so much of the person I was, someone I am ashamed to say, who would be cynical of my condition. Is it right that I am now scared to see someone who may “not believe in Fibromyalgia” when even a Rheumatologist Consultant didn’t. I believe that people who have known me for any length of time will vouch for my credibility. I am scared but I have a slight hope, I still have these moments of lucidity when I can think and talk like this. So many people with chronic health conditions are beyond even those moments.

Have you been here?

Have you been in my position waiting to attend a PIPs Assessment? If so, I would love to hear from you if you had a good experience and a positive outcome. There are far too many negative stories swaying the balance. Perhaps you know of someone with a chronic health condition and feel cynical about it, why not just talk to them about their experience, if you are sincere they will probably help you understand?

Finally, perhaps you work in politics? All I ask is that you read this and think about some of the points I have made. Surely doctor visits alone, should be enough for the benefit system. Saving the medical profession time and the administrative costs.

Until next time,
Gentle Hugs,
Susan