Where’s the support for chronic pain?

If you suffer chronic pain I don’t need to tell you that it’s a battle, if you don’t, its a battle!

Last winter I became depressed and finally in March I contacted the pain clinic that I attend and told them, in September I finally saw their psychologist.
I cope one day at a time and I know that’s all anyone can do but what I mean is that I can’t look to the future, I have CRPS (complex regional pain syndrome) and there is no cure and the meds don’t actually stop the pain.
Its a battle, I wake up in pain and I spend the whole day in pain and then I try to sleep in pain and there is no support for people in my situation, as I mentioned in a previous post, I was recently asked what my care plan is and I laughed, I laughed because there isn’t one. I see the pain clinic consultant every six months and nothing changes.

I really started to think about this last night when I saw an amazing advert on TV for Marie Curie cancer care, it was people talking to a person that then transformed into a hovering light and then it said Marie Curie “Light in the darkest hours”. It was such a very well thought out advert and was so nice, but it made me think about the fact that you only have access to this sort of help if you have cancer, MS, had a stroke or any of the major illnesses, if you just suffer chronic pain then, well you’re on your own.

Yes there are forums, Facebook groups and privately run websites but there isn’t a dedicated helpline or visiting professionals, that will visit when you are at your worst.

I am very lucky to have an amazing wife and two daughters who support me, I am very rarely alone and yet there are times when I can still feel alone. This is where Twitter, Facebook and forums are beneficial, I have people on there who live with chronic pain and therefore they understand the struggle of living like this, its strange how I am also able to offer support despite struggling myself.

Yesterday I spoke with the physio about massage, not the standard physio type massage though. I asked if the hospital works with massage therapists, I had a back massage a couple of weeks ago and it was the most beneficial thing I have had for my health in a very long time, but there isn’t and I was told that if that’s what I need, then I need to pay for it myself.
Now I realise that our NHS is struggling with cuts to their budgets but I know of people getting massage and aromatherapy massage from the NHS, this is for cancer patients and other major illnesses and yet because it’s “just” chronic pain, they can’t help.

8 thoughts on “Where’s the support for chronic pain?”

  1. Spot on again Sir.

    I write to you from my hotel today. I thank the good Lord that I have a generous husband who realises that spa treatments help me with my various conditions inc CRPS & fibro. I’m off to the spa shortly.

    I’m already missing the electric blanket I rely on every day but I’m sure the massage will go some way to help!

    People with chronic pain are very much on their own regarding care & support. It’s all about self management now but with 5 conditions and brain fog, I could really do with that support. At the moment it extends to my pharmacy delivering my meds.

    We fight on. . .

  2. Fortunately I don’t currently have the level of pain you are experiencing, but regarding that advert, I know exactly where you are coming from. When I was having bad pain a few years ago the GP tried me with patches but they did nothing to relieve the pain and just made me feel generally unwell. I was lucky for a few times to buy myself Tai Chi massage therapy but it’s not easy finding a practitioner and of course however reasonably priced it is still a significant outlay. The most effective pain relief for me (I have Stills Disease) is heat, specifically hot (sometimes with Epsom Salts) baths, and the ensuing relaxation. I am concerned at the lack of suitable bathing opportunities for people such as ourselves. Showers may be ok for keeping clean but they do little for one’s state of wellbeing. Again, one needs money to install a suitable and accessible bath, which fortunately I was able to do many years ago and is a complete lifesaver for me.

      1. Exactly, which used to be my problem. Walk-in baths are expensive to install but they are fantastic therapy but the authorities just expect everyone to use ‘wetrooms’ type showers. Someone ought to open up launderette type premises for the pain-ridden to immerse themselves in accessible baths. I even have trouble getting up from the rising and lowering seat in my bath, so I have to sit on an extra ‘cushion’ but it’s wonderful to be able to at least get my lower legs immersed, and exercised. Epsom salts in a footbath and a hand bath bowl might help a bit, although it’s messy to organise moving deep receptacles of hot water around and keeping the rest of your body warm and comfortable throughout 🙁

      2. What about Epsom salts taken via a foot bath/ foot spa? I’m thinking of trying this as I can’t get in/out of our bath either

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