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Hello...I am new here.

Cynthiajoy profile image
6 Replies

Hello. I am new here.

My name is cynthia. I am soon 60. I have immflamatory erosive arthritis in my wrists so far.

I am also a breast cancer survivor and have been diagnosed with Complex regional pain syndrome since having numerous surgeries.

My ribs have been giving me so much pain lately. As well as my wrists..but now my hair hurts!!!

I also have crohns since 1987.

I am about to start one of the biologic drug. Prometheus I think it's called.

My question is what is everyone doing to control their pain. And has anyone had experience with this hair hurting?

Thank you.

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Cynthiajoy profile image
Cynthiajoy
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6 Replies
Leonwp profile image
Leonwp

Hi there and a warm welcome to this friendly helpful forum,there are lovely caring supportive people here. Im so sorry you have been through all this, way too much for one person. I take max doses of Tramercept and an opiate based drug called Targinact, neither stop the pain but the 2 doses of opiate allow me 3 hours sleep every 12 hours, if i took any more i would be a dribbling idiot but sometimes im tempted because the pain can still be horrendous. Ive had no experience with the hair thing but as im as bald as the proverbial coot im not surprised!. Blessings.

linda-5502 profile image
linda-5502

Welcome to this site everyone cares and are helpful now to the hair yes I have itchiness soreness and sometimes feel like banging my head against a brick wall especially at night. I also used to have straight hair and I mean straight now the left side so completely "frizzy why no one can tell me BUT.I it has happened since my first very bad flare up when I was diagnosed with RA and Psioratic Arthritis. It is miserable as I cant do a thing about it and can't style it. This disease is a bugger take care xxxx

DelicateInput profile image
DelicateInput in reply tolinda-5502

Just thought I would post about your hair as I am also a frizz bonce. Buy some good quality hairdresser standard irons/straighteners. I bought mine from Rush nine years ago. The hair is holding too much moisture and that makes it frizz. If you run the irons over the hair in the morning, it straightens it beautifully. You will see all the moisture evaporating as steam. I don't know why this has happened suddenly to your hair though.

in reply tolinda-5502

Certain drugs can make your hair change. Mine changed from straight to curly. I was thrilled!

Hello

What an horrendous time you are having. The complex regional pain must be awful, and that on top of everything else.

I would think that the Complex regional pain diagnosis would make everything hurt (including hair!). I know exactly what you mean about the hair hurting, I get the same thing with migraine.

With regards to pain. I have taken quite a few things (including oromorph). Oddly, the more pain killers I took the more pain I experienced. I think my pain receptors were stuffed!

Do you see a specialist about the complex regional pain? Have they suggested anything for you?

I find alternating pain meds helps, and I always take something before the pain becomes agonising. Sounds like the pain may always be agonising for you.

Sorry I'm not much help.

nomoreheels profile image
nomoreheels

Hiya Cynthia & welcome. You do seem to have a lot going on, it must be so wearing, pain gets us down I understand that. I was diagnosed with RD & OA in 2008 & am osteopenic borderline osteoporotic. Fortunately my since my GP patiently worked through my trying various pain relief, titring up from the smallest of doses until the optimum one was found for each I've been pretty much pain free for around a couple of years, save for the odd need for an increase in dose. If you can control your pain I find you sleep better, that in turn helps cope with the waking day so to my mind it's important to find the right mix to get on with life basically. Has being seen at a Pain Clinic ever been suggested? It's another option maybe if not.

Yes, I've had sore hair! It is actually your scalp the pain is coming from but the nerves are a bit mixed up so it actually feel as though it,s your hair. There is a scientific name for it but I've mislaid the key that lets me into that part of my memory at this mo! I'll get back to your when I find it.

Your hurting ribs may be due to costochondritis. It's caused by inflammation of the costchondrial joint which connects the ribs to the sternum (breastbone). It's a very painful condition, my h has it. Do mention it to your Rheumy at your next appointment, he may offer you a steroid injection to ease the inflammation.

I'm not sure which biologic you mean. There's a drug company called Prometheus, so maybe that's who make it? Is it for your Crohn's or your arthritis?

I hope you find it helpful being here, we're a friendly bunch. We're happy to share experiences & tips so ask away. 🙂

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