A CPS post.

It’s been two and a half years of living with chronic pain. There have been times I have had a handle on it and times it has got the better of me. But one thing is for sure, its going nowhere.

In that time I have learned that management is the key to surviving high levels of nerve pain. There has been little improvement in the pain levels. If anything it has evolved. Spreading to different areas of my body as new symptoms appear to test me.

I chased up a neurologist appointment this week and it seems my case was forgot about after my assessment in march. That’s 8 month’s wasted that I could have had my follow up appointment to discuss multiple sclerosis as a diagnosis. 8 month’s that I could have been getting the right help. My phone call has got the ball rolling and I’m back in the system. It’s a frustrating place of limbo to say the least.

I have been proactive this year in dealing with past trauma in the hope that lower stress levels get my pain levels down. It’s definitely been beneficial if not painful at times.

New symptoms concern me but I have no where to discuss them. With month’s between appointments I am left to deal with them the best I can. I have also recently been diagnosed with type 2 diabetes. Just another problem to understand and deal with.

Meditation is my first point of management. Pregabalin, baclofen and amatriptalyne are the meds I have settled on. They don’t take the pain away but they allow me to function and deal with every day life. Which is anything but normal with triplet toddlers.

I feel like I’m up against it, sometimes on a daily basis. With central pain syndrome it’s all about living along side the monster and not letting it take the wheel. Not always easy.

I apologise if this seems like a bit of a whinge. I have ups and downs on this journey and positivity comes and goes. Sometimes it’s just tough going and I’m tired of hurting.

6 Comments

  1. Chronic Pain ís the pits. Í have háð sí many replacement Í skunda like Jacob Marley’s ghost. Being responsible for two vulnerable adults metans that Í have tokeep going, especially ás one ís beingbullied bý his “carers”.
    You will dó this. Sé what you’ve achieved already. X

    Liked by 1 person

  2. I feel we are on a similar time line. My second stroke in Feb 2018 has left me with bad CPS and no help from anyone. Stay strong. Driving takes my mind off it until I get stabbing pains in my legs.

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  3. Did your pain start after anything in particular? Mine was surgery. Then a follow up procedure caused more widespread pain. I saw a neurologist who said I may never get answers but did an MRI incase it was MS. This MRI found nothing. A pain Dr advised my nervous system is sensitised and said I had central pain.

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    1. My pain started after a car accident. I got bad whiplash that triggered widespread pain. I was diagnosed with diffuse central pain syndrome a year later. They are still looking into ms as I have other problematic symptoms

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      1. Si, I was diagnosed with Fibromyalgia after I’d had a bad car accident. Has this been checked with you?
        I have widespread pain, especially uncomfortable in my legs & shoulder-blade area. I wake from a good sleep like I’ve been run over by many trucks …
        It affects me cognitively, tiredness, insomnia, brain fog & lethargy aside from constant pain.
        In some countries & places it is difficult to diagnose & sadly once diagnosis happens, it is blamed for other ailments: for instance I fractured the T11 & this was not picked up for several months as I was told repeatedly, “It will be Fibromyalgia.”
        I eat Tumeric, ginger, use Relief Fx (Koru Nutrition) to help reduce inflammation & pain, swim in a warm doing lengths & exercise in a hydrothermal pool to keep pain levels down.
        Never 100% pain free, yet better when I do these things, including prayer & meditation.
        At times, I’m overwhelmed (I have several health issues besides this) and have a good cry, feel sorry for myself, go see my counsellor & jump back into life again, and being grateful for what I have as it could be worse.
        Shall pray for you, I understand the difficulty & I don’t have a husband & four children to be responsible for: just me!
        Blessings & love
        Jennifer

        Liked by 1 person

      2. Hi Jennifer
        I have been diagnosed with central pain syndrome since the accident. The only reason ms Keeps coming up is because I had tell tail signs before I accident.
        I have also been diagnosed with a functional cognitive disorder (fnd). Its all very confusing at the moment and I have no professionals with which to discuss my concerns. I received a letter yesterday saying my next neurology appointment is in February next year. It’s a tough situation at times

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