My 1st Urology Appointment (bit of a TMI post)

I had my first Urology appointment last Thursday (3rd July). I wasn't sure what to expect with this visit, and internet searches gave me conflicting information. The appointment letter was quite a short one, and only asked me to bring any medication I currently took. I wanted to be prepared for a whole host of questions from the Urologist, so I took down some notes of the kind of symptoms I had:

Urinary Frequency (At least 10 times in the day. 1 or 2 times at night, so not too bad at night)

Sudden, unexpected urges to urinate: Not fun at all, if a toilet isn't easy to get to.

Difficulty urinating sometimes (I can be absolutely bursting, but it feels as if my body is too weak to be able to. I also get a bit of a nervous bladder, where hearing voices outside the toilet will put me off).

Feeling as if I'm retaining some of the urine; hence the need to keep going back. (I have developed a very unhealthy routine when I need to leave the house, of 'going' 4 times, sorting out what I need to take with me (after washing my hands of course!), then going back to the toilet another 2 times before I feel I've emptied my bladder enough to actually leave the house. I also have to wipe a certain number of times before I can leave. If I don't, I feel as if I will be absolutely desperate for the toilet when I leave the house.)

Very occasional small leaks: This happened at least once when I was at school, at least once on holiday, and at least once since. Luckily the leaks were too small to be noticed, but I still felt incredibly embarrassed.

Occasional occurrences of Cystitis from the age of 16 to now.

I wasn't sure if I needed to bring a urine sample to my appointment, as it didn't mention it on the letter (yes I know it's a Urology dept, so probably common sense to bring one. Shh!) , but I figured I would be able to do one if needed when I got there.

My mum came with me in the taxi, as luckily the Urology department at my local hospital is a small one; very easily accessed from the car park. I recognised a couple of members of staff there too (I used to temp as a research assistant at the hospital). At first, I thought it'd be a bit awkward (with this post, you'd never guess I'd feel embarrassed, speaking about my waterworks!), but I think knowing some people there actually put my mind at ease a little. I always get nervous at my first visit to a new specialist. After such a long time of seeing doctors who would fob me off, tell me it's "just" Depression, or simply not believe me at all, I do tend to expect the worst.

It wasn't too long before my name was called. It turns out, I was supposed to bring a sample. It would've been nice for the letter to mention that! Anyway, I went to produce one, gave it to them, had my blood pressure tested (normal, as bloody usual, even though I felt like hell and was incredibly faint and dizzy!) and then was asked to sit and wait for the doctor. It was a longer wait (possibly half an hour? Maybe more?) before I was called to the doctor's office. The brainfog had kicked in by this time, so I was struggling to remember how to string a sentence together, let alone actually remembering what I'd noted down.

The doctor introduced himself, then asked what had brought me here today. I know I tripped over my words a lot, and mum had to prompt me, but I managed to explain that I'd had the symptoms a while, they'd got worse, these were the symptoms etc (I forgot to mention the trouble urinating though!). He asked questions such as how many times do I go in the day, at night, have I ever leaked, do I fully empty my bladder etc. I also mentioned the cystitis. He then asked whether I'm sure I'd had cystitis, and whether I'd been tested and had it confirmed by the GP. I said that the times I'd had it, I'd just had a quick phone appointment with my doctor, my symptoms had matched the criteria for cystitis so the GP had confirmed it and prescribed me that cranberry powder stuff, which is supposed to help. I explained the symptoms I'd had, but the doctor said he didn't see any evidence of it on my medical notes, and the GP really should've tested me for it. I have a feeling he didn't believe me...

(TW: Suicidal thoughts)
We also went through my existing diagnoses. I listed them: Fibromyalgia, Vitamin D Deficiency, Suspected Overactive Bladder, Depression and Generalised Anxiety Disorder. He commented on my mention of Depression, and asked (very rudely might I add!) "What've you got to be so depressed about then?!". I felt a bit shocked that he'd asked such an ignorant and insensitive question.

This isn't me feeling a little down. This is constant, unrelenting, hopelessness and despair. This is suicidal thoughts and urges. This is taking all my mental strength to not take all the tablets in my bedside cabinet, when I should only be taking my prescribed dosage, because how could I bear to have my parents find me like this. This is being frustrated with myself for just. not. doing it. This is falling asleep at night, wishing I don't wake up the next day. This is feeling like a disappointment. This is feeling like I don't deserve to have anyone love me, so there is no point talking to them because all I do is bring burden and pain upon them. This is knowing I shouldn't think like this, knowing it's not a logical or healthy way to think, but not finding a single way to stop myself from thinking like this. Depression is an illness, not a reaction. There's not always a reason. Assuming someone must have a reason to be depressed, only serves to make the guilty feelings worse.

I couldn't answer this insensitive question. It took all of my strength not to have a go at him (because I needed some treatment!). He rephrased his question and asked "Did you have some kind of trauma, that caused the Depression?". Now, whilst a Psychologist, Psychiatrist, Psychiatric Nurse etc might have some reason for asking this, a Urologist certainly does not. I was here for a physical problem. Sure, Anxiety probably makes these symptoms worse, but it's not the Depression! I just said that having the Fibromyalgia, and my life changing so much (giving up work, losing friends, a relationship etc) probably led to it being this bad. I then showed him all the prescription meds I was taking, and the subject was changed.

He confirmed the diagnosis of Overactive Bladder Syndrome, and said that he would write a letter to my GP, so that she could write a prescription for some medication in a week's time. I was surprised he hadn't written out the prescription there and then, but I've had these symptoms for around 8 years. I'm sure I could wait one week. He also said he'd like me to have a bladder scan, to see if I was retaining any urine. The appointment was then over, and I was asked to go to the toilet to try and empty my bladder, then sit and wait for the nurse to fetch me for my scan.

The scan showed that I retained about 46ml (this was after going to the toilet 3 times since my last full drink (a good few hours before I'd left the house), and only having a couple of sips of water inbetween). I was glad that I was right, but the doctor said this was normal, so no further investigation was needed for this.

My next appointment with him is in 2 months time, to see if the medication is helping much. I really really hope that this is the one symptom that can be sorted out.

I have nothing to hide, but that's not the point.

I've been thinking about the links between my physical and mental health, and the attitudes of this government and the media.

Years ago, when I was healthy enough to work, I used to assume that those who needed to claim disability and sickness benefits (namely DLA and ESA) would be able to do this without much hassle. I also believed that they would be properly supported, without judgment or harassment.

Now I know, this isn't true.

Ever since I've been claiming ESA, I've noticed the increase in tabloid headlines; claiming that most people "on the sick" were doing so fraudulently. Contact details for reporting fraud have been more visible, and so malicious calls have been made. More programmes on television about people on benefits. Society seems to be more suspicious of anyone on benefits (be it ESA, DLA/PIP or JSA). I'm not sure if I'm being paranoid, but I feel as if all eyes are on me when I leave the house. I still have people doubting how ill I am, how much pain I'm in, whether I *really* need my walking stick. It's horrible, but my experiences of being judged/harassed are fairly mild compared to some.

Just over a month ago, I went on holiday to Spain with my parents. Before anyone says anything about "luxuries", a relative had helped us pay for the holiday and we had all saved up bit by bit for over a year. We didn't go on fancy excursions and we stayed in a small hotel. But I was relatively quiet about this, on social media. I worried about people judging me for daring to spend their so called "hard working taxpayer's money".

I shouldn't have to justify what I spend my money on. It is no one's business. As long as I'm only claiming what I qualify for, and I'm making sure essentials are paid for first, why should it matter? I'm lucky that I live with my parents, and that (with a long time saving up small amounts) we can afford a nice thing on rare occasions. If I couldn't live with my parents, I dread to think if I'd even have a roof over my head, let alone any other essentials. That odd nice thing gives me something to look forward to. Having a lifelong, incurable physical illness, has taken a real toll on my mental health. I spend my days resting, trying to make sure I have one hot meal a day (on bad days it does have to be take-out when my parents aren't able to help), blogging when I'm able (with the help of a speech-to-text program) and going to appointments with dad's help. I've not seen one improvement in my physical or mental health. In some cases, things have become worse. Every day is pretty much the same. I am trying to study for a CBT diploma, from home, but I haven't completed nearly enough; due to a whole host of symptoms (including brainfog).

Last night, I found out that the government are currently picking claimants of ESA, JSA, Income Support, Pension Credit or Housing Benefit, at random and are visiting them (without notice in most cases) to check they are receiving the correct amount of benefit. They will ask for ID and to look at bank statements. They cannot force themselves into your home, but your benefits could be affected if you disagree to this visit. See these links for more information: https://www.gov.uk/dwp-visit  http://www.nhs.uk/CarersDirect/moneyandlegal/otherbenefits/Pages/benefits-agency-visitor.aspx

This knowledge sent my anxiety through the roof. I thought I was about to have a panic attack, and have been feeling very ill since. I have nothing to hide. I have declared everything to DWP (including the holiday, might I add), yet people like me are still treated with suspicion. I worry about the effect this, out-of-the-blue visit, will have on those with serious mental illnesses. How about those whose illnesses (physical and/or mental) could be seriously compromised by the stress of these visits?

I'm sure you have heard of the effects of the infamous Work Capability Assessments, people being (wrongly) found fit for work, unfair sanctions and the huge delays for being assessed. These things have led to deaths by either suicide or pressure causing peoples' illnesses to progress severely. What civilised society would allow this to carry on, all in the name of making sure that the miniscule percentage claiming fraudulently are found out? Is it worth it?

UPDATE:

I recently subscribed to Benefits and Work and received their latest newsletter on 30th July. They made a Freedom of Information request, regarding these DWP visits, and have received the following information:

"As a result of that request we can now reveal that, in reality, the vast majority of people who get a visit do not get a letter in advance – surprise visits are the rule, not the exception. There’s more on this below.

However, we can also reassure our readers that:

• you don’t have to let them in; and

• you can insist on being given proper notice;

• you can insist on having the interview at a DWP office instead of in your home.

And doing so won’t affect your benefits, though refusing to take part in an interview at all may leave you open to a fraud investigation."

"There are also certain classes of claimant who should never receive an unannounced visit, including:

• “customers suffering from depression or a medically defined mental illness
• customers with an alcohol or drug-related dependency
• disabled customers where there is evidence from the preview information that they may be distressed if an MRO calls unannounced."

However, where the visiting officer suspects, on the basis of your files, that you may be committing fraud they can still carry out an un-notified visit even if you are in one of the categories above.

And it’s important to be aware that one of the things visiting officers will do is look out for any difference between the details given in your work capability assessment medical report and your behaviour at home. The rather bizarre example given is that of a claimant who is up a ladder washing windows when visited, but their incapacity is listed as vertigo.

So, if your condition is a variable one and you’re having a better day, make that very clear - even if you aren’t asked."

This may not be brilliant news, but at least we now know what our rights are, and that there are exemptions (whether the DWP practise what they preach, however, is another story).

SOURCES

1. http://www.benefitsandwork.co.uk/
2. A newsletter, from Benefits and Work, sent to me on 30/07/2014, Entitled "An Unexpected Knock At The Door Is The DWP Rule, Not The Exception"
3. Click here for the online version of the letter.

The long journey of meds

This is just another little updates post. I want to try and write more regularly, so I don't end up with an extremely long-winded post.

The whole appointment booking system has been changed at my GP surgery now. It used to be that you could call any time they're open, and book appointments in advance, as well as same day appointments. You could also sign up for the online booking facility. You would always get a face to face appointment, unless you asked for a phone consultation. Now, they've decided to only do same day appointments (apart from very exceptional circumstances, but don't ask me what specifically) and they've taken down the online booking facility. You ring reception and give them details of why you need the appointment. Instead of booking one for you, they get the GP to call you back, so you can explain to them what is wrong. The GP themself then decides if you need a face to face appointment, and will book one for that day if you do need one. It's supposed to help with communication. I find this a much more complex and ineffective system. It is especially difficult for people who have problems with communication over the phone. I could barely get my words out when speaking to the GP on the phone, as my brain fog and anxiety were very bad that day. Luckily I could get an appointment, and she did understand, but it didn't stop me being extremely nervous and embarrassed. Online booking would be a lot more helpful for me!

I really don't visit my GP enough. Maybe it's lack of faith in treatments, or me trying to deal with things by myself. I went the other week for a few reasons, but mainly for pain and Depression. I'd lost a little faith in her, because of the dismissal of my hypermobility symptoms (and a few symptoms that come up in the Ehlers Danlos Syndrome diagnostic criteria). I was reminded of how supportive and helpful she is, when it comes to working with me to get referrals, new medication, generally talking through symptoms and side effects etc.

So far, these are the tablets I've been put on for Fibromyalgia (well, some when they thought I had M.E). Oh and not altogether of course!:

Citalopram 40mg, Amitriptyline 30mg, Lyrica (Pregabalin), Neurontin (Gabapentin), Codeine Phosphate, Ibuprofen, Zopiclone (for sleep),  Duloxetine.

I've also been prescribed tablets for Vitamin B12 deficiency, Folate deficiency and Vitamin D deficiency. As you know, I'm on the Vitamin D meds for life. As far as I'm aware, my B12 and Folates are back to normal. I only had to be on meds for them, for about 3 months. The Citalopram, Codeine and Duloxetine did not suit me AT ALL. I was very very ill on these, so had to stop them. The Amitriptyline (at that dose) didn't do a thing, apart from help with sleep, so my old GP took me off those. The Zopiclone didn't do a thing either. The Lyrica and Neurontin did nothing, apart from make me put on weight. NOT something I wanted as my self confidence is extremely low.

My GP and I discussed the meds I'd been prescribed and whether they'd been effective. She's now said I can go off the Gabapentin completely (I've already weaned myself down from 900mg to 300mg very slowly, with little or no withdrawal symptoms). Has anyone found that they've lost some of/the weight they put on with this med, after going off it? She's also prescribed me a stronger NSAID, Naproxen 500mg for pain. I'm hoping this at least takes the edge off. I'm not expecting to be 100% pain free. I'd just like the pain to be manageable enough that, when I can work again, I won't be in agony halfway through my shift. When I lived with my ex and was working (keep in mind that this was a sit down, not-too-stressful job) I had to grit my teeth throughout my shift, keep myself awake, hope people didn't notice how often I went to the loo, use all my energy just to concentrate, and I was completely done in by the time I got home. This was when I was less ill as well. To do even that job, would be impossible right now.

I'd been indecisive about this for a while as well, but I mentioned wanting to try anti-depressants again. I'm attending psychotherapy every week and I'm hoping that does help, but I need something to help with these massive dips in mood and these huge suicidal urges. I said the things that had been holding me back, were possible side effects and the possibility of even more weight gain. She had a look through her medication book (I forget what it's called now!) and I suggested possibly going on a higher dose of Amitriptyline. It would at least help the sleep anyway. I also asked whether this would cause weight gain. Luckily, my GP said it wouldn't.

So that's it for now! I'm getting very groggy with these new meds, and I'm even more fatigued at the moment. I think this is to be expected though. I'll be seeing my pain specialist again in a couple of months. She has referred me to physio and for acupuncture, but I wonder whether she will want to put me on any other treatment for nerve pain. I don't think she quite understands how debilitating Fibromyalgia can be.

*Edit*

I almost forgot to say! A little off topic for this post, but I saw my Bladder Specialist for the last time today. I've cut down my caffeine and other irritants as much as possible, and I'm doing the bladder training exercises, but I've not found any difference in urgency, retention or frequency. As I've done everything she suggested, there's nothing more the specialist can do, so she has discharged me. I've now got to wait for my Urology appointment; where it's likely that I'll have to have a Urodynamic test and I'll be put on more medication. I'm at the point now, where I'll just try ANYTHING if it'll work. I'm fed up of my bladder issues taking over my day to day life.

And breathe...

I have about three blog posts worth of things I want to talk about, and I'm not going to be writing them in any particular order. I was tempted to write them all this week, but I think that may be a *teensy* bit ambitious :)

I think I may have talked about my first session of High Intensity CBT and since then, I've had another two sessions. If I remember correctly, the therapist said that I will have 10 sessions altogether? This is a little better than the 6 guided CBT (level 2) sessions, and I'm hoping that I can make some progress now.

Although there's bound to be some digression, I do like how these sessions appear to have a bit more structure to them. I now have a Therapy Contract and Care Plan; something I didn't have before. In it, my long term goals are:

1) To go out e.g. to town and visit friends.
2) To seek support from others when I experience thoughts of self-harm/suicide.

I would like to make "getting back into employment" a long term goal, but that's dependent upon my physical health as well. Although I'm sure the DWP would disagree, it's also a bit too ambitious right now. Generally, I'd like to be better at seeking support instead of shutting myself away, and I'd also like to be able to get out of the house (for something other than an appointment) more often. To me, those seem like realistic and fairly focused goals. There are other little bulletpoints in this plan, which are more general. These include working with the therapist to ensure the treatment is tailored to my needs (well, as much as CBT can be I guess), being given choice in my treatment, making sure the therapist takes into consideration things such as disability and religion (when suggesting treatments), keeping each other informed of things such as cancellations etc and attending every session if I'm able to.

So far, the main focus seems to be upon the Depression. I have far too many complications when it comes to the Anxiety, so I'm not sure if we'll even have time to begin to try anything for it. At each session, we have to talk about my suicidal ideations. I still find it very hard to open up or even properly understand what goes through my head when I have these thoughts. I may be fairly open, speaking about them on this blog and social media, but I don't like talking about them with someone directly. My therapist is keeping in contact with the crisis team, but I've not been referred again. At our last session, I said that I feel I'd be wasting their time, as I've not got any solid plans and I haven't attempted suicide. I have to just say whether I believe I'm at risk or not. I think she is reassured enough for now.

It was nice to get away from that subject for the majority of the last session. She said that she wanted us to try Mindfulness this time.

The therapist asked me to close my eyes, try and relax and concentrate on my breathing. Then, I was to focus on the things I could hear around me, what I could feel physically (the back of the chair against me, any aches, pains or stiffness etc). I also had to place my hand on my thigh and, as I concentrate on my thoughts, point to the left of my thigh to indicate a past thought, the middle for a present thought and the right for a future thought. I could open my eyes at points when I needed to (I did get very dizzy and thought I was going to fall off the chair quite a few times!). Once I'd finished this, she asked me to look round the room slowly, to bring my focus back, and then talk through my thoughts, feelings and anything I noticed.

I told her that I found it very hard to relax and I my thoughts did tend to change from one to the other, to the other, very quickly. I also got distracted very easily (there was a baby crying and some people having a loud conversation in the waiting room). When asking to concentrate on my thoughts, I often found that I wasn't completely sure of what I 'was' thinking. I'm sure it's impossible to be thinking absolutely nothing, but maybe most of the time (unless a very vivid idea occurs) our thoughts are mainly subconscious? Don't quote me on that, this is just me trying to understand it all! I didn't say this to her exactly, but I get a lot of muscle twitches with the Fibromyalgia, so I don't think I can ever sit completely still. The pain makes me tense up as well; which can't help the twitches much. Because of this, I feel very self conscious about closing my eyes and trying to sit still, while someone is watching me. What I did tell her was that I felt a bit silly about it.

She wants me to try and practise Mindfulness every day (even if just for 5 minutes). According to some research she found (I can't remember the title of the study, otherwise I'd search it out myself), it is supposed to be helpful for Depression, fatigue and chronic pain. I am definitely going to try and do this; although I think it might prove difficult at first. I'll of course blog about how I go, whether it helps any of the symptoms etc. It was nice to do something a bit different this time though.

In my next blog posts, I hope to keep you updated as to what I've been up to recently (appointments and otherwise) as well as more thoughts on the Work Programme, ESA assessments etc.

Quick update

Hello!

I've abandoned my blog for a while. I have had things going on, and things to talk about, but just no energy to form them into some sort of fluent post. I think it's all catching up on me, as I'm feeling very ill at the moment. I'm being bad and not pacing properly. I've been pushing myself too much, to do things. Mainly things that need to be done though. I can't rely on my dad for everything. It isn't fair on him, when he has so much on his plate already. I should be listening to my body (especially when it's practically screaming at me!) but instead, I've ignored it and carried on until I had no choice but to lie down.

I had a family meal to go to yesterday (Sunday), and I started the day feeling awful. There were relatives there, that I hadn't seen in years though. I felt obliged to make the effort and go. I'm really suffering for it today (and will be even more so, tomorrow), but I'm glad I went. It was nice to see my nan having a lovely time (it was her 80th birthday!). I couldn't eat much, and had to go to the loo about 4 times. That was a bit of a walk from the table, so I needed my stick the whole time.

I worried about what certain relatives would say about my stick. The last time some of them saw me, I wasn't needing to use it (or had too much internalised ableism to, I don't know). I don't think my invisible illness was so invisible this time however. I know I was visibly shaking, when I got there. Some of my relatives asked a few questions, but they were really understanding. No really awkward comments, which I was SO glad of. No one asked about whether I was working yet as well, which I was also very glad of.

Anyway, today I woke up in A LOT of pain, more stiffness than usual, cold sweats, dizziness, weakness, confusion and nausea. I should've stayed in bed all day really, but I hate not being nice and clean and showered. I dragged myself out of bed (about 3pm) to do that, and had a long rest before eating. I'm lucky that I'm physically able to do that when I need to, even when my body is screaming at me to rest. It's also my time of the month right now, and I get incredibly painful periods (is that another flipping symptom of Fibromyalgia? Probably...). I've been doubled over with pain today.

I'd love to have a better form of pain management. So far, the only pain pills I have, which don't give me awful side effects, are Ibuprofen (400mg). They just about manage to work on headaches, but don't even touch the surface of any other pains. If I've not already overheated (which I do very easily), I use a hot water bottle. It very temporarily helps my back, but it has to be quite hot and ends up burning my skin anyway. I suppose a burn is easier to cope with than the chronic pain I get though. Other than that, I just rest when I have to. The only time I don't feel the pain is when I'm asleep, so I cherish sleep* quite a lot.

*Sleep is a relevant topic I want to talk about in my next post, so I'll leave this here for now and try to get some sleep soon.

Bendy pictures and more!

I'm finally going to my doctors' to get a second opinion on the hypermobility. So far, I've been to my GP about my dislocating/partially dislocating left knee (See My Weird Knee post) and she suggested hypermobility. I went again, to show her I had multiple hypermobile joints, my knee was not getting any better and I found places like my shoulders and hips were also partially dislocating. I was getting pain in these joints and I wanted to be referred to see if I could possibly have EDS Hypermobility type. She straightaway said that, unless this condition ran in my family, there was absolutely no way that I could have it. 

I want to come to the doctors with more information, as well as pictures of my hypermobile joints. I've included these pictures below; alongside some pictures of unexplained stretchmarks round my knees. 

The Beighton's score is used to test flexibility in certain joints. The Brighton criteria (including the Beighton's score) helps to diagnose Joint Hypermobility Syndrome though. (source: http://www.arthritisresearchuk.org/arthritis-information/conditions/joint-hypermobility/diagnosis.aspx)

 I'm not sure how hypermobile my knees look. The left one dislocates nearly every time I kneel down.

                                    

 It's not part of the Beighton score, but my spine looks fairly curved in the lower back area. This is where I have the worst pain too.

These last 3 pictures show the strange markings on my thighs and near my knees. I have some faint scars (they didn't show up in the photos) and I think the above may be stretchmarks. The top one is the most impressive!

Ok, so I need to go over the signs and symptoms of JHS/EDS to show the doctor tomorrow. I may edit this post to say why I think I might fit the criteria. Any tips or anything, feel free to comment!

UPDATE

*Sigh* still no luck. This doctor did actually check my joints but decided that I didn't get enough points as some of them weren't quite hypermobile enough. She reckons it is my kneecap that dislocates rather than the joint itself, and my shoulders have more of a bad subluxation than an actual dislocation (even though I have to pop them back in). I just don't know! She's the doctor, so there's only so much I can argue; not having medical qualifications/experience myself. Maybe I just won't be taken seriously until I have a dislocation that I can't pop back myself? I was hoping this would be investigated before that happens (I really don't want it to!)

Thank you for all the advice :)

     

"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.