Tag Archives: Fibromyalgia

Lockdown

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Well 2 weeks before the UK went into lockdown I was at hospital having a camera inserted into my nose and had other tests. The diagnosis was Allergic Rhinitis, 2 months on I’m still waiting for test results to find out what it is I’m allergic too. However it could just be my fibromyalgia and the body is attacking itself. I have tried to chase up the results but the GP, hospital and NHS are understandably busy dealing the pandemic.

I’ve been in self isolation for almost a month now as all my medical conditions been I’m classed as a vulnerable person during this crisis. But the only trouble is all of the symptoms I get overlap with covid-19 symptoms, so I don’t know what is what. However one thing I can say is I feel terrible: physically, mentally and emotionally.

Social distancing is a very interesting thing at the moment. I’ve never been very social and social situations were very difficult for me with my autism but I’m finding that now everyone is social distancing its making parts of my life easier. I don’t have to try and make small talk or remember the correct social etiquette. I think neurotypical people (non Autism people) will find this a lot more challenging. For years I’ve been told to try and be more social to speak up and fight my corner, but now those rules have gone out the window and everyone is experiencing the world as a person who is introverted and doesn’t like social events.

As for the lockdown and having to stay inside, well that’s just been my normal life for 7 years. The outside world with my Autism, anxiety, depression and PTSD has been a scary place and its been better and easier for me to lock myself away and now the whole Country is doing it. People seem to forget that lockdown is their usual way of life. Hopefully now that the whole country has experienced it peoples attitudes will change, wishful thinking I know.

I struggle with recognising that I need help and struggle with asking for help. I have reached out to Bury Council, the government and mutual aid charities near me to get help with shopping and collecting medicines, so far everyone has said no. Even though I’m classed as vulnerable and self isolating people are refusing me help because I’m not elderly. I agree elderly people need and should get help but so should others. Everyone is trying to save lives and protect the NHS but by ignoring vulnerable people isn’t right, we have a lot of complicated medical conditions and would rather manage at home then put more strain on the health service. But at the time. Without help or coordination we are forced out to do shopping and collecting medications to make sure we stay alive and healthy, putting ourselves at risk and that could tax the health service later on. I struggle to ask for help, I’m very independent and I don’t want to cause trouble or make someone’s lives more difficult by asking them to do things. Even more so now that people are risking their lives to do it.

STAY HOME – PROTECT THE NHS – SAVE LIVES

Routines

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After getting my formal diagnosis of Autism in 2018 I was referred for ‘Life Coaching’ in order to help with my confidence and to be able to have more understanding on how i see the world and to try and make sense of how my view is different to other peoples and to gain more understanding of how people react to it.

The Life coaching will be done in 10 sessions every 2 weeks. I’ve only had my first session and The life coaching is trying to get me set up on a proper routine. I’m finding it very tough and gruelling, to be honest I’m struggling. Everything is timed and planned out the day before, from appointments to bedtime and what time to wake up, right down to set times for brushing my teeth. Other than making me more tired and stressed out i’m not seeing any benefit or real reason for it.

Having autism, fibromyalgia and chronic fatigue syndrome (plus a number of other physical and mental health issues) I have always been told to do things at my own pace and when i’m ready. Trying to force myself to do things at set times is just making me depressed and when i dont complete a set task at the set time. I feel guilty and feel I’ve let not only myself down but the life coach and others to. I don’t know if i’m putting to much pressure on myself or its my autism and i’m being overwhelmed. Either way i’m struggling. Maybe its too much too soon.

Hopefully the next session will be able to tweak things and help me out about. I know the life coach said it would be hard and i’m willing to try and do it, but my body is protesting. Doesn’t help that i’m still doing Physiotherapy at the same time.

No gain without pain

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Been a long time since i did an update, mainly to be honest because I have been very overwhelmed. Have had appointments and hospital trips weekly.

Fibromyalgia – Been going to Fairfield general Hospital to their physiotherapy department to take part in ‘Pain Management Sessions’ has left me extremely sore and in lots of pain in places i didn’t know could hurt! I have been doing lots of different exercises, it is hoped that because my body is always in pain by doing these exercises it will help train my nerves and mind to recognise that I’m not doing any damage and there is no reason for them to send pain messages. it does seem very counter productive. Fibromyalgia causes widespread pain and doing exercise makes it worse, but hopefully it’ll improve my symptoms and pain levels in the long run, but right now i’d just settle for a single day without pain. I would say I used to be very active, but lately just doing the Washing up is killing me. all these exercises dont help with my Chronic Fatigue syndrome either. I feel like a zombie!

Autism – I have finally received my referral for ‘life coaching’ it is very early days but it looks promising although will be quite hard. It’s a 4 month programme and will hopefully improve my confidence and me learn new life skills that others take for granted. This will hopefully help me deal with situations and my autism without having a meltdown.

Mental Health – All the medical professionals that are trying to help me all agree that i still have Issues with the events of 2013 and that i did to work through that trauma. I Was referred to Bury Healthy minds for more counselling and Cognitive Behaviour Therapy, however i have had to stop this while i go through the Life Coaching with the Autism team. As its felt that working on 2 types of therapy will not be helpful and could end up being confusing.

Surgery – I’m due to have surgery to have 3 wisdom teeth taken out. This will be in hospital under anaesthetic. Not looking forward to it, but will be good once done as it will stop some if not all of the dental pain i have and will hopefully stop any more infections.

So everythings a bit all over the place at the moment. It is affecting my depression and getting overwhelming but i’m trying to struggle through. Some days are better than others.

Understanding – At last

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After years of complaining of pain and numerous trips to Hospital. I was referred to see the Rheumatology department at North Manchester Hospital. Saw a very nice Doctor who really did know what he was doing and asked alot of in depth questions. It was amazing for someone to actually understand what I had been living with and going through for years.

Was poked, prodded and examined.

The Doctor has diagnosed me with the following:

Fibromyalgia
Sleep Disorder
Chronic Fatigue
Irritable bowel syndrome (IBS)

He advised that all of these along with my Autism, Hyper-mobility and
psychological issues (Anxiety & Depression) are all intertwined.

They are Chronic conditions with no known cure. So is now a process of how to manage the symptoms.

I am being referred to Pain Clinic, Physiotherapy, Hydrotherapy and
Psychiatry. He will be writing to my GP to request that I go on sleeping
tablets and to increase the medication dosage that I’m currently on as
well. They took some blood for testing to cover the bases, but will not need to go back and see that department again.

There was a student Doctor observing my appointment and had apparently never seen someone whose joints where so bendy. So least I’m helping future generations of Doctor’s learn if nothing else!

It really is a genuine relief to get these conditions diagnosed and have someone to listen and understand. I had only been expecting a single diagnosis of Fibromyalgia, so to come away with 4 different conditions was not only a complete shock but also a validation of the fact that I really am not very well. I had thought that all the symptoms I had were normal and the pain I experience is what everyone else feels. It wasn’t until I had been diagnosed with Autism that I have begun to realise that it wasn’t normal.

Its strange having Autism and not feeling, experiencing and expressing myself as other people would. Its very hard to explain, what is normal for me is not normal for the wider community and vice versa.

I have tried to express myself and tried to tell people that things were ‘not quite right’ for years but I have either been bullied, fobbed off, taken advantage of or just plainly ignored. So to prevent myself from having to experience those again I just shut down, closed myself off and told people what they wanted to hear. However since my Autism diagnosis I have been learning to try and express myself better and this has led to these new conditions to be diagnosed to join my long list of other health issues. Now it’s a case of learning how to manage the symptoms and conditions.

Over the years I have learned to mask and hide things and to just keep pushing through them. Now that the health professionals are telling me that yes – what I am feeling and experiencing is real, and not to try and hide it or bottle it up. I worry that people will think that I’m making things out to be worse than they are because they weren’t an issue before.

It’s a lot not only for me to take in, but for my friends and family. At least we have some understanding of what is going on.

Another Diagnosis – Fibromyalgia

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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