Another Diagnosis – Fibromyalgia

Well as anyone who knows me, will know that i’m not very well. Doctors seem to agree as I’ve received another diagnosis of Fibromyalgia.


The main symptoms of fibromyalgia are outlined below.

 Widespread pain
If you have fibromyalgia, one of the main symptoms is likely to be widespread pain. This may be felt throughout your body, but could be worse in particular areas, such as your back or neck. The pain is likely to be continuous, although it may be better or more severe at different times.The pain could feel like:

  • an ache
  • a burning sensation
  • a sharp, stabbing pain
 Extreme sensitivity
Fibromyalgia can make you extremely sensitive to pain all over your body, and you may find that even the slightest touch is painful. If you hurt yourself – such as stubbing your toe – the pain may continue for much longer than it normally would.
 Stiffness
Fibromyalgia can make you feel stiff. The stiffness may be most severe when you’ve been in the same position for a long period of time – for example, when you first wake up in the morning.It can also cause your muscles to spasm, which is when they contract (squeeze) tightly and painfully.Fatigue

Fibromyalgia can cause fatigue (extreme tiredness). This can range from a mild, tired feeling to the exhaustion often experienced during a flu-like illness.Severe fatigue may come on suddenly and can drain you of all your energy. If this happens, you may feel too tired to do anything at all.

 Poor sleep quality
Fibromyalgia can affect your sleep. You may often wake up tired, even when you’ve had plenty of sleep. This is because the condition can sometimes prevent you from sleeping deeply enough to refresh you properly.You may hear this described as “non-restorative sleep”.

 Cognitive problems (‘fibro-fog’)
Cognitive problems are issues related to mental processes, such as thinking and learning. If you have fibromyalgia, you may have:

  • trouble remembering and learning new things
  • problems with attention and concentration
  • slowed or confused speech
 Headaches
If fibromyalgia has caused you to experience pain and stiffness in your neck and shoulders, you may also have frequent headaches.These can vary from being mild headaches to severe migraines, and could also involve other symptoms, such as nausea (feeling sick).

 Irritable bowel syndrome (IBS)
Some people with fibromyalgia also develop irritable bowel syndrome (IBS).IBS is a common digestive condition that causes pain and bloating in your stomach. It can also lead to constipation or diarrhoea.

 Other symptoms
Other symptoms that people with fibromyalgia sometimes experience include:

  • dizziness and clumsiness
  • feeling too hot or too cold – this is because you’re not able to regulate your body temperature properly
  • restless legs syndrome (an overwhelming urge to move your legs)
  • tingling, numbness, prickling or burning sensations in your hands and feet (pins and needles, also known as paraesthesia)
  • anxiety
  • depression

Depression

In some cases, having the condition can lead to depression. This is because fibromyalgia can be difficult to deal with, and low levels of certain hormones associated with the condition can make you prone to developing depression.


I think my doctors now dreads asking for my medical notes. lol

Invisible Disabilities

I suffer from a number of Invisible Disabilities including Anxiety, Depression, PTSD, being hard of hearing and having musculoskeletal disorders. On a good day people would never know, but there are times when some help is needed.

I’m very conscious of my disabilities and don’t like to let it show it. Probably stems from the stigma around mental health and people with disabilities and also my own feelings of not letting my disabilities affect my life. Everyone else can do it/things so why cant I. I’m sometimes my hardest critic. I don’t like to complain that i’m in pain, or saying I don’t feeling right, because that’s all I’ve ever known, just assumed that’s how everyone is. however through my counselling I’m starting to come to terms with things and starting to see things in a different light.

I Have seen that Transport for London is rolling out a campaign so people with hidden disabilities can wear a badge which says “Please offer me a Seat” BBC news Article I think this is a really good and useful idea. The only down side is that its only for London. I Sometimes struggle to stand for long periods and when travelling on public transport it isn’t always a smooth ride, as you are jostled about (no matter how good the driver), for me this can be very comfortable as my body moves one way or the other, the pressure on my knees and my muscles increases and decreases something I cant prepare for it and can cause more pain. I don’t like to attract attention and wouldn’t have the confidence to ask someone for a seat, even if they are sat in a ‘priority seat’ or a disabled seat. Cause like me they might have invisible disabilities themselves. So a badge would be a good idea. When I have had to rely on crutches to get about people have been more than willing to help me and offer seats, but i don’t always require crutches and being a 34 year old man people wouldn’t think that i’d be disabled.

With more awareness of invisible disabilities and illnesses the Metro News website did a great article of “Why are people with an invisible illnesses so scared to ask for a seat on public transport?” link to article here

So I’ve decided to take a very small step and order myself one of these:

16mm Round, Disabled Lapel Pin Badge

Invisible Disabilities are hidden, and not something to be proud of or to show off. But people wont know how to treat you if they are not aware. So a small disabled badge on my clothes, might not change anything, but some observant people might see it and may offer me a seat or help. Cant hurt to try?

Truthfully, I am ashamed that i’m disabled and that i’m a different to everyone else. But with counselling I’m realizing “Its OK to be Me” and I have to accept that I am disabled and shouldn’t be ashamed of it or ashamed of asking for help. I don’t think it’ll make a huge difference but even any small difference has to be worth it?

Angry

I’ve attempted to write this post multiple times and each time I’ve deleted for fear of being rejected, treated differently or being locked up. However, I need to get these feelings out. I tend to bottle feelings and my thoughts up. All that happens is it just eats myself up inside.

I’ve been feeling very angry these past weeks. Firstly at myself for not recovering quickly enough and letting/allowing myself to feel this way. Other people seem to be able to survive and get by their trauma and issues without any problems, so why can’t I?

I’ve been having nightmares a lot recently and these are completely different to any I’ve had before and don’t really know how to handle them. The only way I can see to avoid/rid myself of these is not sleep. It’s not a conscious choice, my mind would just rather be awake and active, rather than have these nightmares. I feel that I don’t have any ‘fight’ in me anymore. I’m physically and  mentally exhausted, but these ‘new’ nightmares are violent ones and what’s scary is its me being the violent one. I’m fighting and attacking/defending myself against people who have abused and hurt me in the past. I’m not a violent or angry person, I never have been. I really don’t understand where these feelings and emotions have come from or how to deal with them.

I’ve also been in lots of pain over the last week’s as well. I think it’s down to the orthotic insoles the Hospital has made for me. I have a number of issues with my legs. I have flat feet, numerous issues with my knees and also have issues with my hips. I Suffer from hypermobility (means my joints more way outside the ‘normal ranges’ they are meant to.) as the insoles are helping to treat my flat feet, this puts pressure on my knees and my hips. As everything is trying to readjust to the new positions I’m suffering a lot of pain, more than I let on (don’t want to seem a whimp or crybaby). I know there’s nothing that can be done at the moment to help. GP won’t issue any pain medication, PhysioTherapy and the surgeons won’t do anything until my Mental state is better. However I don’t think the Mental Health teams or the GP are listening to me or understand what I’m going through. NHS department’s don’t seem to talk to each other. everyone seems to be refusing to help and not wanting to do anything until something else has happened. I think it all needs to be done at the same time, but that seems impossible. So I’m left in Limbo and in pain. The lack of sleep due the nightmares is probably increasing the pain levels as nothings getting a proper rest and time to heal. Seems like another vicious circle which I can’t escape until something breaks, I’m desperately trying to hold on and keep my head above water, not just for myself but for family and friends. For fear of letting them down and a fear of showing how truly weak and useless I am. I’ve lost 3 years of my life and there doesn’t seem to be an end insight.

I hate disappointing anyone and have been at times telling be what they want to hear rather than the truth. I know that’s counter intuitive but I don’t want people sad and worried over me. that’s a lot more important things going on in the world than me.

I’m angry, tired and in pain. A bad combination at any time. I’m still plodding along but I really do need to be fit and well and back working. Since having my Disability payments stopped (PIP) I’m in a big mess with money. I just can’t seem to manage it like I used to. Am I losing all control, everytime i think I’m getting back on track it gets messed up. Have more money going out than I get in. I don’t spend money on me it all goes on bills. luckily I’m not in arrears but I can’t carry on this way, it’s no way to live. well it’s not living really it’s just getting by. If I could afford it I’d buy new clothes as mine not really fit anymore or have fallen apart. My weight seems to go up or down so regularly most clothes I have don’t fit anymore.

Sorry about the length of this post and any waffling I did. sometimes it helps to get the feelings out even if it is just on this page. Still a release of emotions and pressure and I guess that can only be good.