Sunday 6 April 2014

"It shouldn't be disabling"

So, I had my Pain Clinic appointment earlier this week. I'm not sure what to think of it really! I feel I should think of it as a good appointment, but there were parts that I didn't like so much. I'll explain.

Once I'd sat down in her office, the Pain Specialist asked what brought me here today. What a brilliant time for my brain fog to kick in! I'd written down notes but I still managed to miss out half the things I wanted to say. I told her I'd been diagnosed with Fibromyalgia and none of the tablets I'd been prescribed had worked, so my GP had referred me to her. She asked me which medication I'd previously been prescribed, what I was on now, side effects etc. She also asked me what my diagnoses were* and when I'd been diagnosed (I'm sure all this information had been written down on the forms I'd sent her a while back!) and I tried my best to remember. She asked where the pain was, and what kind of pain I experienced. When I was halfway through my list of things that hurt, she ended up just asking me where it didn't hurt (haha). I replied with "errm, my feet?"

(Although I hurt all over, my worst pains tend to be in my shoulders and all over my back. It's a lovely combination of nerve, joint and muscle pain and the subluxing shoulders don't exactly help)

One thing she asked, which I found a bit strange, was what I think caused the Fibromyalgia. Well, I wouldn't know that for sure would I? Are there even possible causes for this? I told her that I didn't really know. I could've had a virus beforehand, as the first doctor I saw thought I had Glandular Fever, even though my glands weren't swollen. I hadn't been in any accidents or had any injuries around that time. I described how my symptoms had started. First came the nausea, unbearable fatigue and general unwell feeling. The pain started a few months on and gradually got much worse and more widespread until I had to stop looking for work because it was making me so ill.

I think she was trying to bring my mental health, at the time I first became ill, into the conversation. She asked how my life was going around that time. I told her that it was alright. I had friends, a relationship that was going well, I was enjoying student life and I loved my course. Mentally, I was ok as well. I was very confident around that time. I got involved with lots of things, had a thriving social life and actually felt quite popular! I explained that it was having the illness for so long, and losing so much, that contributed to the Anxiety and Depression. Maybe it's me being overly suspicious, but I felt she was trying to imply that it was mental illness that was causing my symptoms. I was way ahead of her there. I know 110% that the physical illness came first.

Next, she brought me through to the examination room and asked me to do things such as standing on tiptoes, then heels. I used my stick to help with this so I didn't fall over. I was then asked to try and touch my toes (my feeble attempt showed how much my back was hurting me, couldn't even get to knee height), squat, twist to the left and then right. This felt like an Atos assessment! I thought she'd tell me I'm fine by the end of it! She poked round my back, neck, shoulders and hips. She told me I was extremely tense. I said I was trying to relax, but the pain was very bad. I don't think my shoulders are ever relaxed. Luckily that didn't take very long, and I let her know when she got the tender points. I still feel bruised from it, even now.

She noted I used a stick, and asked how/why I acquired one. (I hate being asked to justify my walking stick, it's not for show! Do you think I enjoy the dirty/weird/pitying looks I get from people?) I quite plainly told her that my mobility had become much worse and, after trying my mum's old walking stick for a while, I bought my own as it helped with balance and took the strain off my hips.

Here we come to the title of this blog post. She said that Fibromyalgia "shouldn't be disabling" and that people with it are never bed-bound or wheelchair users. In any other situation I would've told her straight away, that she was wrong! But of course this was an appointment and I had to be a good patient and listen to the doctor. It was a wild generalisation for her to make! Fibromyalgia can range from quite mild to very severe! Of course it can be disabling! What is her definition of "disabled" then? It must be a very restrictive one. I think I just raised my eyebrows at her and looked at my stick.

I felt I was fighting a losing battle here, but I wanted to talk about the Hypermobility. I said that my GP had found out that I had it, after examining my knees (which dislocate when I kneel down, see the "My Weird Knee/Leg" post) and that I had subluxations and hypermobility in other joints. It hadn't been specifically diagnosed, and the GP hadn't wanted to follow it up; dismissing it as part of the Fibromyalgia. It was causing me a lot of pain in those joints though, and I asked about EDS. Straight away, she said there was no way it could be EDS. She didn't examine me or ask me any questions to see if I fit the diagnostic criteria for any of the types. She didn't even mention the different types. It was just a simple "No, it won't be that. You wouldn't want to have that". I insisted that I really would like my knee investigated, and the specialist told me that I would have to be referred to an Orthopaedic Surgeon. **

We then talked through pain management options. This was the good bit, as she had a few suggestions (not all medication either!). I've now been prescribed Cymbalta (Duloxetine) and will be referred for physiotherapy and acupuncture. She also mentioned pacing (no one has ever properly taught me how to do that, they just tell me to do it) and CBT. I said I was already under the care of a Psychologist, and had received CBT before, so that option was covered. She did say that she wanted to see me again, to see how I was getting on with the new medication. I'm just waiting for a letter about my next appointment.

So, that was my appointment! I wanted to include an account of my psychology session here but I've had to reschedule that. (It was due to be the day after the pain clinic appointment, but I hadn't slept a wink and was far too ill to leave my bed, let alone the house). Next appointment will be my Work Programme one. Oh the joys...

* My diagnoses so far are Fibromyalgia, Vitamin D Deficiency, Overactive Bladder Syndrome, Anxiety and Depression.

** EDS is Ehlers-Danlos Syndrome. I don't want to self diagnose at all. I hope I don't come across as if I am. It is simply that I want the hypermobility and dislocations properly investigated. If after that, a specialist decides it is definitely not EDS then that is fair enough. Frankly, I wouldn't want to have it (it is a horrible condition, with not nearly enough awareness) but I do want answers. I don't believe this hypermobility is just another symptom of the fibro. I do want to get a second opinion from another GP, but I'm hesitant to because so far, no one has investigated properly and I'm not feeling too optimistic about the whole thing. I feel as if it would only be taken seriously if I had a big dislocation that I couldn't put back myself.

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