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

[Gecko]

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!

 

[Cheshire]

Sorry it all turned so bad...

You don't need to be upset with yourself, you did the thing you thought would help you!
If there had been proper research about this disease, we shoudn't have to try weird "treatments"...

 

[Gingergrrl]

@Gecko For me chiropractor and massage, etc, was very helpful following a major car accident in 2006 and also following my severe injuries from the antibiotic Levaquin in 2010. It has helped me with muscle pain and injuries, etc, but it has never helped me with ME/CFS itself.

I am going to be seeing an osteopath (it was supposed to be today but I had to postpone the appt) so I will report back here once I do. I have never allowed my chiro to adjust my neck (not comfortable with that!) but I have done back adjustments that helped me with pain in the past.

Hope you feel better soon!

 

[minkeygirl]

Horrible. I too had problems from a chiropractor and that was before I was sick.

Have you thought about maybe physical therapy? Have someone see what might be off then use that to treat things? You'll be more in control an no manipulation.

 

[daisybell]

From what I have read about stroke following neck manipulation, it occurs immediately, so I don't think you should worry unduly about that. I think I would go to see my doctor and perhaps ask for an x-Ray to make sure that the discs etc are all in place.. If all looks clear, perhaps a physio could help?

 

[CantThink]

I'd suggest seeing your GP or a private physio.

Don't blame yourself!! You weren't to know.

 

[Insomniac]

I also made the mistake of going very frequently to a chiropractor over a long period. In my case it did not make things worse, just emptied my purse.
Since then I just occasionally go to one about once or twice a month maximum. It helps the fibromyalgia pain a bit. It also gets rid of my humped back temporarily.
It's extremely hard to manage this illness and know what is right or wrong. I have been fooled by the "it'll get worse before it gets better" nonsense.

Where did this chiropractor study?
After seeing your GP and getting an X ray I would consider seeing another chiropractor but this time only one that has had other fibromyalgia patients or ME patients.

I prefer go to those that studied in Canada, Australia. After those two countires I will only take one who studied in an American University, if it sounds of a high standard. I look them up on the association of chiropracts. I won't go to British trained chiropractors because I have had bad luck with them. I am just telling you all this in case you decide to try another one. I am sorry you are going through this.

 

[WillowJ]

My sister used to feel better with chiro, but even if I would go to the same one, I felt worse. I think in general, there are some people that this is just not right for. Also there are some crummy practitioners, just like in any field. I think going too often might also be bad (maybe for those of us with collagen issues shouldn't go often or not at all, is my guess).

However I did go to an atlas orthogonal one with the percussion machine, but she was very careful and did not adjust other places. Also I went only once in a while, when I wanted to. When she asked me to come back soon, I did not, as much because I cannot go out without crashing as because I felt it would be too soon.

What I like better is massage, but need to find exactly the right practitioner. Wrong way causes PEM. The one I have now comes to my residence and bills my insurance.

In the short term, you may like to ice yourself with short spells of ice. You can make your own icepack by mixing rubbing alcohol and water (approximately 1 part alcohol to 2 parts water) in a sturdy freezer bag. I like to tint with food coloring to make it easy to find and identify.

 

[eafw]

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.

Have you seen your GP ? It might be a bit of a wait for physio but neck pain is something they would probably take seriously at least

As to the guy you saw, he sounds incompetent. It can be very hit and miss finding someone privately but there are good osteopaths out there if you still want to pursue that.

 

[Scarecrow]

@Gecko Sorry to hear about your experience with osteo/chiro you saw.

I used to see an osteopath regularly but haven't been for the past six months. She used a combination of standard osteopathy techniques, which is what I will refer to in my post, as well as the Perrin technique.

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 wouldn't be happy with explanations that like. My experience was 'yes' there was discomfort but certainly no significant pain. I was acutely aware that my posture and/or alignment would change overnight after treatment and that this would cause an initial discomfort. Every so often, after a treatment it would be feel slightly painful and definitely 'wrong' but she would always correct it at the following visit and the pain was never intense.

Do you know if your therapist was using chiroractic or osteopathic techniques? How invasive were they? I've always found osteopathy to be a remarkably gentle (almost relaxing) yet profoundly effective therapy.

You need have this damage treated. It's never a guarantee but a personal recommendation is a good sign.

Good luck.

 

[Daffodil]

@Gecko Sorry to hear about your experience with osteo/chiro you saw.

I used to see an osteopath regularly but haven't been for the past six months. She used a combination of standard osteopathy techniques, which is what I will refer to in my post, as well as the Perrin technique.

I wouldn't be happy with explanations that like. My experience was 'yes' there was discomfort but certainly no significant pain. I was acutely aware that my posture and/or alignment would change overnight after treatment and that this would cause an initial discomfort. Every so often, after a treatment it would be feel slightly painful and definitely 'wrong' but she would always correct it at the following visit and the pain was never intense.

Do you know if your therapist was using chiroractic or osteopathic techniques? How invasive were they? I've always found osteopathy to be a remarkably gentle (almost relaxing) yet profoundly effective therapy.

You need have this damage treated. It's never a guarantee but a personal recommendation is a good sign.

Good luck.

may i ask why you stopped? did it help?

 

[PracticingAcceptance]

My experience was 'yes' there was discomfort but certainly no significant pain. I was acutely aware that my posture and/or alignment would change overnight after treatment and that this would cause an initial discomfort.

Thank you for this, I just had my first osteopathic treatment yesterday and your words explain some of what I'm feeling. I have pains in new places and positions that are normally comfortable for me are not comfortable today, forcing me to sit/lie in better alignment.