Mrs s: My daughter who is a young thirty year... - Pain Concern

Pain Concern

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Mrs s

Sharad1 profile image
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My daughter who is a young thirty year old has been suffering from ankylosinng spondylitis and she is I getting worse day by day . She has tried all sorts of treatment , she is seeing a chiropractor now . Is there anything out there to help her manage this illness . Does hydrotherapy help. She has not tried that yet . Is there one in Stratford . She has been prescribed a treatment but she can't have that yet because she keeps having infections after infections. Her immune system is so low that she is not resisting to antibiotic.

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Sharad1
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nedd profile image
nedd

Sorry to hear that your daughter is struggling. I have no experience with this condition but another back condition and when I read that she had been seeing a chiropractor my eyes watered. So I lifted this link. The info on maniputaltion is on page 21. Has she managed to get onto a pain management course. I did one from the JR in Oxford and hydrotherapy was included. Had I been up for it I could have gone back and had a few sessions in thier pool.

arthritisresearchuk.org/~/m...

nedd profile image
nedd

Whoops sorry have spent so much time in Oxford hospitals got them confused.

Tis the Nuffield and here's thier link. Good luck.

ouh.nhs.uk/optimise/

Sharad1 profile image
Sharad1 in reply to nedd

Thanks for this info nedd. Much appreciated . Will look into this. Mrs s

earthwitch profile image
earthwitch

She needs to be under the active care of a rheumatologist who should be addressing the inflammation. If it isn't under control then they need to review meds and try something new. Rheumatologist really is the first line of action. Chiropractic really isn't advised for AS, as any kind of manipulation has the potential to do major damage (worst case - spinal cord injury and paralysis) in an AS-affected spine.

The best self help you can do is gentle stretching exercise daily. You can download the back to action app from the National Anklylosing Spondylitis Society -w hich it would be well worth her joining. They have regional groups, some of which have hydrotherapy groups (which is excellent if you can get to it), and they also just have a lot of information and telephone support as well as an online forum. Gentle stretching exercises are incredibly important though - she may feel too stiff and sore to do them, but you just have to persist, as that is the best way to avoid seizing up completely, and it really does keep you flexible and that helps relieve pain.

The other main forums for AS are both international ones: kickAS.org or the Spondylitis Society of America. Both have a lot of british folk using them.

Sharad1 profile image
Sharad1 in reply to earthwitch

Thanks for that info will look into that . Mrs s

Hello

I have the same condition on top of my chronic conditions

I went to chiro for many treatments and it was very expensive.

Over the last thirty years I have found Hydro very useful, swimming is useful as long as she has no skin complaints.

One of the main treatments she can try is posture, that takes a great deal of stress of the spine, so for that she could discuss that sort of treatment with an RA Specialist.

She will most probably take NSID medications with pain medications when she is bad.

I am unable to use swimming now as the water upsets a skin condition I had at my old address a hydro therapy bath with air and water. I also had a special shower with steam.

When I moved I again purchased a hydrospa bath again with air and bubbles. Also I have a large shower that again has spar jets and special shower heads. I use the shower more as now I have problems getting in the bath. When disabled we can sometimes have the VAT refunds from all the gear and the labour to put the stuff in.

My bathroom is large enough for a wheelchair and the Occupational Therapist provided rails etc so I could use the bathroom with more safety.

Your Daughter could also ask for training in the use of a TENS machine, many of these can be used as an EMS and in that mode will tone the muscles.

I understand disability can be expensive so ask the GP to arrange a visit from an Occupational therapist if aids are needed it is a useful service

BOB

Sharad1 profile image
Sharad1 in reply to

Thank you Bob , very useful info . Will certainly do that too.

johnsmith profile image
johnsmith

Have a look at the Alexander Technique.

alexandertechnique.co.uk/

The techniques will not cure the problem, but it will help her manage the problem better.

Hope this helps.

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