Fibromyalgia

At one point I was in the car accident and I was given acupuncture for six weeks and it was wonderful, I didn’t have a trace of fibromyalgia for three months, and I put it down to the fact that I’d had the acupuncture.

Unfortunately, we don’t get acupuncture in the National Health Service except maybe one or two sessions when you go through a pain management clinic, and that’s only if they feel it will help your condition not if you say it helps, so unless you can afford to go privately, but it does help when you get it and I’ve done that a couple of times when it’s been really bad.

They give you one shot, one shot is not enough, and I think things like that is very frustrating, because it’s very expensive, and I’ve had it twice and I felt it took, it alleviated all the symptoms, I had never slept better in getting it, but it’s something I can’t afford.

How does it make you feel if you know, there is something which does actually work for you but it’s not available, via the public health system?

Well I think it’s very annoying because you think “Well if that works”, if they looked at the bigger picture. Using natural remedies doesn’t help everybody, but it can help for short periods of time. If they used them and found how beneficial they were the bigger picture would be people wouldn’t have to take so much time off work, they wouldn’t necessarily be on long term sick if they tried alternative remedies that actually work, and that’s only from personal experience.

It has to be done. The, the one that I go once a month, she’s the deep tissue massage, and that gets rid of all the lumps that can be that big up the back of my shoulders and my neck, and it’s like popping bubble wrap when she gets her fingers, and it’s sore, my god, it’s sore (laughs], but I always feel better after it, I feel that the lumps have gone, the knotted muscles have gone. They come back, but for a day or two I’m a lot better.

It’s the same with the one that I go in the town and, she concentrates on the lower bit. In, in here it’s terrible sore in all this muscle, in here and the back and that, she gets her elbow in there and gives it a good old going over. And I do, oh, sorry, I do, feel better after I’ve seen her as well.

And although it’s not curing I would, I’ve often thought, “I can’t afford this, I’m going to stop them”, but I’m frightened to stop them in case I would feel worse if I didn’t go, whereas I’m going and I’m sort of, we’re, I’m going to these people and that’s the only thing I know what to do with, for myself, and I’m paying to have it done.

I did get given a water therapy, hydrotherapy at the hospital, and that was really good. Unfortunately, driving to the hospital creates the barrier because the pain relief has to be reduced, and then I’m doing an activity, that brings on more pain, but I really enjoyed the hydrotherapy, it was good.

In regards to the physical pain, I mean I’ve found that just my hydrotherapy is the one thing that helps. I’ve learnt by myself that if you use stuff like Epsom salts it can help, but I’ve had to find that out myself. If there was healthcare professionals that could give you lifestyle tips, that would probably help people live a more pain free life, because there’s also a lot of stigmatism on if you exercise it makes the pain less, but when I exercise it hurts, and when it hurts I don’t try because I know it’s going to hurt. But people are saying that you just have to keep trying and it helps, but how can you when you’re in that circle?

So I’ve been on various types of medication and I’ve had various types of what do you call… alternative therapy, which in their own way have been good and quite helpful. You know? Mindfulness and all that sort of thing, and I’ve attended a six-week pain course which was pretty well interrupted by not just myself but those participating who had to go up and move around due to the pain that we found ourselves in for the long periods of being in a sitting position.

You can’t, you’ve got to have a bit of a sense of humour as well with, with this because [shakes head] if you couldn’t laugh you’d certainly cry, that’s how bad. I mean even like when we go to the group, we’re all sitting there with long faces, most of you know, we are, that’s just the way it is, and we’ll have something, we’ll have a bit of a laugh. We had a laughter therapy and I’m thinking, “Oh, this is going to be a load of rubbish”, so I sat, it’s a professional laugh, laughter, thingy, now I start and 15 minutes I’ve said, “I’m not going to laugh”, but once [smiles] they, the people start laughing it’s infectious, and good god, I never felt so happy in all my life, oh, yes, it was fun. They couldn’t stop laughing after but what we were laughing at we don’t know, but it works, [points to side] it works.

So there’s a lot of weird and wonderful, not cures, but things that can relieve the pain a bit and cheer people up and just different things.

And I did over the years also try and find you know, alternative treatments, and get some sort of massage things and anything anywhere that I thought would help. You know, I tried, but nothing really has helped, so.

Well there’s various other things with words that I can’t remember like is it Reiki or something like that, or, these type of things. I tried one or two things, but nothing really seemed to work. And I couldn’t, I didn’t have the energy to keep going, travelling to places to do these things, so.

How far would you have to travel for example to go to such treatments?

About 40 or 50 miles from here.

Would it be one way then?

Well yes, double that yes, yeah.

And, did you access that yourself or you know, was that via the NHS?

No, it was myself.

Yeah, for years, I’ve used osteopaths, I’ve used chiropractors, I’ve used private, hypnotherapists; the money that I have spent over the years is horrific.

What kind of impact did that actually have?

None, absolutely none, but you go because you think you’re doing something, you’re making this, these problems better, but finally the realisation hits that no, you’re not, you’re just wasting money.

And has been you know, out of this based on that experience you had you know, can you see any kind of differences in the care provided between say private as well as, NHS?

Absolutely, if you’ve got money they’ll tell you anything that you want to hear. Unfortunately that’s the way it is that if you’re, you’re willing to throw money at a problem, they will treat you ad infinitum whether they’re doing you harm or good or whatever. But no, I don’t have a lot of faith in things like that now, but at the time you will try anything.

So as I said at the moment, I just… I’m at a stage where I’m not quite sure what I want to do. I don’t know if I want to – I know I don’t want to go down the line of taking a million painkillers. I actually tried alternative therapy last weekend, reiki. It was fabulous. Absolutely fabulous, I loved it, and I think that I probably will go down that line of maybe trying that every couple of weeks or something. It was, it was like lying in a bath of lovely warm water, and there was no pain for, like, maybe half an hour. It was really good. I don’t want to be a person that has to pop lots and lots and lots of pills.

My oldest daughter has a friend that has just learned to do it, so she’s kind of using me as a guinea pig. She has her full training… but it’s a thing that I’d never done before. I think I’m… I feel I’m quite a spiritual person and I’m really surprised that I never tried it before, so she offered to, you know, give me a free session and see what I thought. And yeah, I thought it was quite… it was quite amazing. I have tried massage as well but I found that makes it much worse. Much worse. I have heard people saying, “Oh, it was great because, you know, everything was moved around and I felt great,” but no, I had the massage and within two hours I was nearly crying because I was so sore after it. So, and… I haven’t tried anything else. Just pushing through it, basically.

So you know, alternative treatments, I would say to anybody to try that reiki, it was amazing, it really was. And I think it’s the first time in about two and a half years that I’ve actually lain and been somewhere else, you know? She’s fabulous, the girl that did it. I would imagine they’re all about the same. But if you don’t try it, you’ll never know if it’s going to work, so try it. Rather than the tablets, I would definitely try it.

When you say she was fabulous, what makes you say that?

She was warm and kind and it was all about me, you know? That hour was for me. Absolutely for me, whatever… you know, there was nobody else there in the room, there was nobody else there in the world, to be honest. And it was just peace, it was really good. Really good. And I have to say, I never paid her for it. But it you know, I would have been happy to pay her for it, for that little time that was all my very own. It was good.