Chiropractics/Ostepathy for ME/CFS - worse than before!

[Qunk]

Hi all,

I was suckered into another hindsight scenario where I was told that my symptoms could be caused by my C1/C2 vertebrae being misaligned. After further research and thinking it wouldn't do any harm (plus a large amount of desperation) I went to see the Osteo/Chiro that made these claims and he recommended a long period of treatment (twice per week for 6 months to a year at £40 a pop!).

14 sessions in realised I felt no better and was in a lot more pain. I had a few minor twinges in my back before but now my neck and back were getting significantly worse. My neck felt fine before! Needless to say it was "all part of the healing process" and the "exercises I was given would explain the extra pain". He used a percussion instrument (as they call it) and the occasional push, pop and twist of my back and my neck.

I ceased my treatment and over the last 3 months my neck has been in agony. A constant deep ache and a locked feeling with sudden sharp pains. I was hoping it would just take time to settle but it hasn't gotten any better. Even trying to wear a backpack for awhile leaves me in a lot of discomfort and pain. I have emailed him to ask what could be wrong but he isn't replying.

So now I am left with pain that wasn't there before, a lot less money and a horrible feeling of stupidity and regret that I went to him.

I am considering seeing another chiro/osteo now purely to sort out the pains that were created by the last guy but obviously I'm terrified to go back to someone now.

I have also read about the risk of stroke after manipulating the neck!!!

As a few questions for my own comfort, do you think that my neck/back pain can be mended and do you think that I could possibly be more at risk of a stroke now (or would that have been immediately evident?)

Should I go back to see someone else to sort my pain?

Does anyone else use a chiro or osteo?

I really didn't need the added stress, worry and regret this has caused. Very upset with myself

Any advice and thoughts are greatly appreciated!

[MrsSowester]

Hi there,

Please don't feel bad; we'd all do almost anything to get better and I'm sure the Osteo who treated you didn't intend any harm and is feeling awful too.

About 3 years ago I tried the Perrin Technique and had much the same outcome. He did the neck rotation every time and by the time I got home all I had was a dreadful pain in the neck! It was so sore for days I had to take pain relief constantly. Agonisingly, it would just stop hurting before the next treatment, only for it to happen all over again!

This was all compounded by the fact the practitioner was over 50miles away and my long suffering husband had to take 1/2 a day off work every week for several weeks, then fortnightly to drive me there and back for 20minutes of rushed, expensive treatment that hurt me and made me grumpy.

So I found an Osteopath locally who was more holistic in her approach, spent more time, charged less and I liked. She didn't rotate my neck, but did pop the small of my back, lymphatic drainage and cranial osteopathy. I always felt good afterwards and never had pain as a result and I'd go back in a heartbeat if she hadn't retired.

She did see me out of the last relapse before this one and I had about 6months of being pretty well.

I don't know if my last recovery was a co-incidence, or due to the treatment, or placebo, or the focussing on recovery, or the relaxation... but I don't think it really matters, I felt she helped.

In your shoes I'd visit a Chiropractor who uses an x-ray for diagnosis and have initial consultations with a couple of Osteopaths, compare what they all diagnose then pick the one you click with.

Osteopaths are taught to encourage their patients to believe they can get better (and I personally believe positive thinking is a good thing) - But don't trust anyone who tells you they can cure you,

Hope this helps,

All the best,

Mrs Sowester X x x

[sickandtiredgirl in reply to MrsSowester]

Hi Qunk

I had a very similar experience to Mrs Sowester. I trekked weekly to a chiropractor who did the mid-back crunch and neck twists along with the Perrin massage techniques. I think the massage part helped a little, but I was always in huge pain after the mid-back and neck manipulations, so I declined to have them. On the plus side, whilst I was lying on the table, it suddenly fell into my head that I should try acupuncture for my ME (or is that SEID now ) and stop the Perrin treatment. So I asked my chiropractor if she knew anyone locally who was good at acupuncture and she recommended a guy who did kinesiology and acupuncture. I've learnt the hard way to trust my intuition, so I gave him a go.

I come from a scientific background, so the idea of muscle testing in kinesiology as a treatment sounded very dubious to me. However, he explained that my body was out of line in many areas and that the acupuncture would be much more effective if this was addressed first. I was still very dubious, but desperate to try and get some recovery.

That was four years ago, and I still attend him regularly and get good relief. The kinesiology manipulations are much gentler than traditional chiropractor 'crunches' and don't cause me such awful pain in the days after a treatment. I almost felt that my body went into some kind of central nervous system shock if it were crunched and I had to stay in bed for days afterwards in huge pain.

I still don't understand how kinesiology really works, but I do know that it gives me some relief and my husband swears by him when he puts his back out gardening etc.

Before you go to any practitioner though, I would ask around from other complementary therapists you may be attending, or others with ME /Fibromyalgia if they would recommend someone. I think the bottom line is, if something doesn't feel right after a session or two, trust your intuition.

Best wishes

Sick and Tired Girl

[Starbys]

Hi Qunk,

Sorry for delayed reply.

I agree wirg Mrs Sowester; there's no need for you to feel bad.

You wanted to feel better and tried something you thought might help; the fact that it didn't help is not your fault.

I alao agree that we should nwver be drawn in by anyone who claims to be able to cure the illness as if that was true none of us would still be ill.

These are usually people after money.

But they target oeople like us with an as-yet incurable disease because they know that we will be more easily drawn in, because we want to get better but there is nothing mainstream on offer.

Just bear that in mind, but you have nothing to feel bad about.

Are u in the uk or usa (or elsewhere)?

Can you go to your regular doctor?

This woukd make most sense as they can examine you and identify what the problem is. They may refer you to physio or advise something to help.

But my thinking is that is you get a doctor to diagnose what the injury is, then even if the de offers no treatnent, you'd then be in a stronger poaition to work out what you think would help you (eg oseopathy, chiropractor, physio, aid like a support strap, or painkillers or whatever u think is best as it's easier to make that decision if a doctor can tell you what is wrong with your neck so you know.

i am sure it's highly unlikely that this would put you at sugnificant risk of a stroke, but if you are worried you could ask your doctor.

Other than that, don't beat urself up, as you weren't to know that the chiropracter would make the problems worse, and I hope very much that u feel better

soon.

Starbys

[MrsSowester]

Hi again,

Just happened across a page in the Guardian online that is covering this topic, although the questioner has backache from a sedentary life style, not neck ache and ME/CFS. As ever there's a good range of responses and some people seem quite well informed:

theguardian.com/money/blog/...

Best of luck X x x

[sulamaye]

I would suggest you see a cranial oesteopath to put you straight after the damage done. A good cranial will be so gentle, but effective. I have seen three since getting m.e - purely because of moving - they have always set my bad arm neck right in only one or two sessions, plus my symptoms will be calmer after a session. We are extremely sensitive to meds, manipulation etc, and most things that helped me before I got m.e like accupuncture or homeopathy have made my m.e worse, but seeing a good experienced cranial has not. Where r u in the UK?