So, I’ve already mentioned I have fibromyalgia and I thought it might be nice for me to explain exactly what happened during my assessment, so that anyone worried about an upcoming appointment might be able to calm themselves a bit.
I was personally extremely nervous about my appointment, as my letter had said the doctor may require me to remove clothing so they could examine me properly, and if that wasn’t bad enough I was being seen by a male doctor.
The letter said I could bring a friend or family member with me for comfort and to act as a chaperone if I wanted to, so I brought a close friend with me who had been through several health issues herself and knew a thing or two about these appointments.
The doctor I saw was kind and initially simply asked me questions about what I had been dealing with. I had to go into a fair amount of detail about what types of pain I was feeling, where the pain was located, how severe I would rate it as and how long it lasted or how often it came.
To be honest it was a bit tricky explaining because when you feel pain you don’t often pay enough attention to rate it on a scale of 1-10, but I did my best.
He asked me about medications I was on and my medical history including depression and anxiety, which I wasn’t expecting at all, so it took me by surprise really. It was hard at first to open up, but my friend helped by explaining some things for me when I couldn’t quite get my words out.
When he had finished asking these questions he took me into a separate room and my friend was allowed to come too. First off he had me lie down on a reclining chair and began bending my arms, seeing basically how much I could move. He did the same with my fingers, legs and feet and put slight pressure on the joints in my fingers, saying he was looking for arthritis or rheumatism as apparently they can feel it in your joints! He actually said I was quite flexible so you don’t have to be stiff and robotic to have fibromyalgia.
He then had me stand up and try to touch my toes, which I’ve never been able to do so I just had to lean as far as I could and he tried to move me gently, seeing if I could twist at the hips and raise my arms, things like that.
Then he said he had to check the alignment in my back and used a pen to draw dots on me. He put these dots quite low down my back so had to ask me to pull my jeans down a little but I didn’t have to take them off. When he had drawn these dots he asked me to bend over again and it seemed to all be fine.
Finally, he had me stand still while he applied pressure to certain parts of my body, apparently there are 18 pressure points on your body which, if painful when pressed, can indicate fibromyalgia. If 11 or more of these are painful, you’ll be diagnosed with fibromyalgia. Although I didn’t count the ones that hurt during the assessment, my diagnosis letter says I was tender in 14 of these points.
These points on your body come in pairs, so they are symmetrical, for example the first points are on the back of your neck, those as a pair are 2 points, so in a way, its only 9 areas in your body, but as you have two of everything, they add up to 18. The other points are on the front of the neck, shoulders, upper back, lower back, chest (sort of the collar bone area), elbows, hips, knees.
The points I found most painful were on my back, as I get the most pain in my back. It was also a little awkward because lower back and hips area is obviously not the place you want a man to be poking you, but it was over very quickly, he warned where he was going to touch me before he did and I had my friend with me so felt safe.
Here’s a diagram of the fibromyalgia pressure points to show you what I mean.
When all this had been done, we went back into the main room and he added his findings to the computer. He then told me then and there that he was diagnosing me with fibromyalgia, which, after many years of struggling to get diagnosis from doctors, really surprised me.
He gave me some leaflets and information on managing fibromyalgia so I could have a look through and explained he would add me to a waiting list to see someone about life managing courses for people with fibromyalgia.
All in all to be honest, it was a lost easier than I imagined. Having anxiety and paranoia made me overthink the whole thing and I got myself so worked up beforehand. To be honest I think I was expecting an explosion or something. So when it was calm, simple and quick, I was extremely relieved.
For anyone who has an upcoming appointment for suspected fibromyalgia or even arthritis or rheumatism, it’s not as bad as you think. I didn’t have to take any clothes off; I think they just put that on the letter to prepare you for every possibility. But also, if they ask you to do anything that makes you uncomfortable you are well within your rights to say no or ask if there’s a different way you can be examined.
I strongly suggest taking a close friend or family member with you, not that you WILL need a chaperone, but more for moral support. It is scary going into a strange room with a strange person and being asked about your medical history. It was especially difficult talking about my mental health, but having my friend with me helped me stay calm, and her ability to read my feelings meant she knew exactly when to hold my hand or say something to give me a break.
I also suggest asking as many questions as you can while you are there. If your memory is as bad as mine (which most people with fibromyalgia will experience) then take a notepad with questions written out beforehand so you don’t forget and feel free to take any notes to look at later. Also before the appointment, if you take someone with you, tell them to also ask any questions they think of. This is good because not only does it mean they may think of things or remember things out don’t, it also gives you a break from talking now and then so you can collect your thoughts.
Another good idea is to keep your whole day free. Take it off work, don’t make plans, don’t plan chores for yourself. Not only will this appointment possibly cause pain and fatigue, but if you have mental conditions too, spending so much time talking about it can get you feeling pretty down and out of it for a while after. It’s a good idea to go home, have a nap if you need it, get yourself a nice hot drink and do something you enjoy, whether that’s reading, art work, cuddling a pet or even just watching a film.
Then, maybe a few days later or whenever you feel up to it, do a little research for the different things you may be able to do to help with your symptoms. You may want to try a different diet or exercise routine, just see what works for you. If it doesn’t work, you don’t have to stick to it, you can try something else, but the more things you try, the more likely it is you’ll find something that helps in some way.
Whatever the case is, remember a diagnosis doesn’t have to mean the end of your life; there are ways to deal with pain and other difficulties. Often it’s a game of trial and error, but eventually, you’ll be able to live just as full a life as you always wanted.