Can anyone help?

Sarah - sarah001@fsmail.net

Original posting, 2005-01-23:

I started with pain in the coccyx 4 months ago. I started a new job and was given a very old, very padded chair to sit on, and after 6 weeks of work I was in agony. I had no idea what could be causing the pain. The only trouble I've had with my coccyx was 20 years ago after a horse riding fall. I was 11, it cleared up quickly and I've not had any trouble since. I assumed with some time off work it would improve.

I went away for a couple of days during November 2004 and after the journey there (about 3 hours) I was in such pain I came back the next day so I could go to my GP. The GP listened to my symptoms: extreme pain when sitting, burning pain when going to the toilet and the urge to pee quickly becoming urgent, and diagnosed coccydynia. I was given Diclofenac and signed off work for a week with assurances this should do the trick. It didn't. It helped a bit but I think that was due to the rest more than anything else. I went back and was given more Diclofenac which I don't feel has helped at all this time around, as it just causes constipation which makes the whole problem worse.

I have a different chair at work and use a coccyx wedge religiously but still I find I'm in pain, my elbows are red and sore from leaning forward, my shoulders hurt from always laying on my side, my right leg hurts down the front of the thigh and my lower back aches from trying not to use the coccyx area. I'm at my wits end, the burning pain returns after I sit for more than 10 minutes, even with my cushion, and I have no social life or sex life at all at the age of 31!!

The only thing that seems to help is time off work so I don't have to sit down, but I cannot afford to leave my job and can't find one that doesn't involve sitting down. I'm open to suggestions and if anyone has or has had the same symptoms caused by a naff chair I'd love to hear their story and hopefully their method of recovery!

P.S. The site has really helped me to realise I'm not going mad!

Update, 2005-05-29:

By February I was seeing an Osteopath who was working on the area externally, didn't work. In March (by this time signed off work sick due to the pain) had the coccyx manipulated internally (3 times) but wouldn't hold even though it gave me 3 painfree days each time. Because I live in a small rural area and the Osteopathy Clinic is the only one for miles I had difficulty getting regular appointments so in a fit of frustration I decided to visit a Chiropractors Clinic 30 miles away. This began another journey!

After tests the Chiropractor announced it was the sacrum causing all the problems. It is wedged behind the ilia on the right side and flared out too far on the left side and obviously in it's non-moving position it doesn't allow the coccyx to function normally either and this is why the manipulations wouldn't hold. She thought 8 sessions should bring about an 85% improvement in pain and function. Not so.

When we reached the 8th session and the pain was worse, the inflammation flared up after adjustments to such an extent I could hardly walk, she recommended I have a second opinion with a more senior Chiropractor at the practice in case she had missed something (I really appreciated this) which I did and no, the diagnosis is correct but they don't know why it won't move. He gave me a couple of sessions for muscle imblances which also didn't work and I finally had to give in, go to the GP for some Naproxen (which has worked rather well although it gives me headaches and indigestion, still some pain but reduced by loads).

So, at the moment I have lost my job, am waiting for an MRI which I should have within the next 2 weeks and assuming that shows no irrepairable damage to ligaments or anything more sinister I assume the Chiropractor will have to persevere for a while. I will let you know how things go!

Good luck to you all and if anyone has any advice I'd be glad to hear it. By the way Dr Michael Durtnall has been a huge help even though I have never visited his clinic, he answers my questioning emails, always promptly and kindly, and I'm very grateful to him.

Update, 2005-09-25:

Lots of people have emailed me asking if I have recovered so I thought I'd better give another update! Here goes...

The chiropractor I was seeing for my sacroiliac problem rang me shortly after my last post to say he didn't think he'd be able to help me and I should look for someone else with different techniques. Needless to say I was devastated. So, I had my MRI (had to pay for it as my GP was very unhelpful and has been very unhelpful throughout) and it showed nothing. Next step was to contact a very experienced physio in the area.

I started seeing this physio in June and she diagnosed the same thing, sacroiliac joint dysfunction (SIJD) and the coccyx pain is from the inflammation around the sacrum and tight sacrospinous ligaments. I have been seeing her once a week since and she has unlocked the right side joint but I still have alot of inflammation all over the sacral area, severe muscle imbalance (her words) and the joints still don't function properly yet. Each time the joints hold their position we try to add a bit of exercise and they collapse again. So, not only have I got coccyx pain but backache, pain in the right heel, pain all over the top of the buttocks and pain in the right abdomen from tight hip flexors.

She is still confident this can be dealt with and she is the most experienced therapist around here so I must persevere. I can sit on firm chairs for quite a while, for a short time on soft chairs and don't use a coccyx cushion as this will make the SIJD worse. I can stand for a short time and walk a short distance on flat ground and swim once a week. Still out of work, can't drive so have sold my car to pay for physio, don't go out much due to not being able to sit or stand for very long and don't have much of a life! My GP's have been terrible, refusing tests unless I pay for them, referring me to pain management when the physio has confirmed this would leave me with a permanent problem, one even told me to have a baby to cure the problem which apparently with SIJD would have been disastrous!

On a plus side, if you think you might also have a problem in this area there is a fantastic site all about it with a resident expert called Richard DonTigny who answers all questions related to SIJD. www.kalindra.com/sacroiliac.htm is where to look and have a good scan through all the articles to see if this applies to you.

A couple of other tips: If you are having pain when going to the loo try taking 4 psyllium husk capsules daily with lots of water. Also to keep mild inflammation in check try 2 Bromelain capsules daily.

That's it guys. Thanks to all who emailed me and I will update again in the future.

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