Arthritis forum

Monife · 10-10-2014 2:28pm #1

Hi all,

Just wondering does anyone know of a forum (apart from Arthritis Ireland, which doesn't get much traffic) for people who suffer from arthritis? Especially for younger people too?

Thanks

skallywag · 10-10-2014 2:35pm

That's a good question, I would also be very interested in knowing a good forum myself.

up for anything · 10-10-2014 9:46pm

There's an American forum: http://forums.spondylitis.org/ubbthreads.php?ubb=cfrm. It's got a lot of traffic and is very informative but can be heavy going. A lot of the people who post there are worst case scenarios and it can be very depressing. It does have a young persons section though.

skallywag · 10-10-2014 10:43pm

I'm pushing 40 myself and my right hip is done. Can't have a hip replacement until I'm *older* . Need to suck up the pain.

skallywag · 13-10-2014 11:08am

up for anything wrote: »

There's an American forum: http://forums.spondylitis.org/ubbthreads.php?ubb=cfrm. It's got a lot of traffic and is very informative but can be heavy going. A lot of the people who post there are worst case scenarios and it can be very depressing. It does have a young persons section though.

Looks like a good site, but seems to focus specifically on vertebrae issues?

cassid · 13-10-2014 10:36pm

skallywag wrote: »

I'm pushing 40 myself and my right hip is done. Can't have a hip replacement until I'm *older* . Need to suck up the pain.

some surgeons will do replacements for people who have really bad degenerative arthritis regardless of age. If your hip is not working and badly effecting your life quality, and if you are in pain 24/7, they will replace it. My advice is get a second opinion

*eadaoin · 14-10-2014 9:08am

On Facebook there is a closed group for people diagnosed with arthritis under 50. It's run by Arthritis Ireland, and is a friendly place to chat and ask questions: https://www.facebook.com/groups/252753428172545/

BrookieD · 14-10-2014 10:00am

Hi Guys
This was something i was looking for due to my 5 year old having been diagnosed with JIA 18 months ago and suffering badly.

As i could not find much in Ireland I decided to start a new site called ArthritisSupportNetwork.com for people who suffer from and support people who suffer from this disease. God know there is little for parents so maybe this will kick start something.

Anyone interested in helping drop me a pm.

dubber · 14-10-2014 5:38pm

There's bugger all information out there specific to Ireland ... anyone have any experience with the consultants in SSC or Blackrock?

Monife · 14-10-2014 5:42pm

dubber wrote: »

There's bugger all information out there specific to Ireland ... anyone have any experience with the consultants in SSC or Blackrock?

Only experience with Beaumont public although my first appointment was in The Hermitage but it was the same consultant there as in public so stayed public.

up for anything · 14-10-2014 7:59pm

skallywag wrote: »

Looks like a good site, but seems to focus specifically on vertebrae issues?

Yeah it's pretty much Ankylosing Spondylitis specific but as PsA (Psoriatic Arthritis) and Juvenile Arthritis are sister diseases people do post about them there. Also a lot of the meds are the same as they are all immuosuppresive illnesses so there is a lot of very useful information on there.

skallywag · 15-10-2014 9:03am

up for anything wrote: »

Yeah it's pretty much Ankylosing Spondylitis specific but as PsA (Psoriatic Arthritis) and Juvenile Arthritis are sister diseases people do post about them there. Also a lot of the meds are the same as they are all immuosuppresive illnesses so there is a lot of very useful information on there.

Ah ok, got it, thanks. I was actually thinking of myself (pushing 40) when 'younger people' were mentioned, but of course the Juvenile group is another topic in it's own right I would imagine.

Irishchick · 19-10-2014 11:04am

skallywag wrote: »

Ah ok, got it, thanks. I was actually thinking of myself (pushing 40) when 'younger people' were mentioned, but of course the Juvenile group is another topic in it's own right I would imagine.

Im 27 and have arthritis.

I'm probably going to be looking at a hip replacement next year.

I'm a member of the arthritis under 50 facebook group and I think it's great. Plus its a closed group so no one on your friends list can see what you post

skallywag · 20-10-2014 10:58am

Thanks Irishchick.

May I ask which pain medication you are taking? I'm also curious as to have you tried cortisone injections at all? I had one in May and it gave me great relief for the best part of 4 months. I know that they are not recommended to be given too often, but if a replacement is the eventual outcome anyway then perhaps there is some merit. I must discuss this with my consultant during the next visit.

garysull · 02-12-2014 1:53pm

I had a hip injection last week, no relief whatsoever. Looking at hip replacement in new year.. Anyone know about co-payments for surgery? I have health insurance but will have to find €2k myself

skallywag · 02-12-2014 2:23pm

garysull wrote: »

I had a hip injection last week, no relief whatsoever. Looking at hip replacement in new year.. Anyone know about co-payments for surgery? I have health insurance but will have to find €2k myself

Just FYI in my case it took 4-5 days before I started to feel any relief.

dubber · 02-12-2014 2:27pm

skallywag wrote: »

Just FYI in my case it took 4-5 days before I started to feel any relief.

That was the same for me ... however, the last consultant I met said if it's done correctly you should get relief straight away.

Edit: on the cost question, it's probably worth ringing around the clinics, some are willing to waive/negotiate fees AFAIK.

skallywag · 02-12-2014 2:49pm

dubber wrote: »

That was the same for me ... however, the last consultant I met said if it's done correctly you should get relief straight away.

Well the shot I had done had two elements to it, one being Lidocaine which is a local anaesthetic so acts instantly (though only lasts for a few hours) and the other being Corticosteroid which took the few days to have any effect but then lasted for many months.

cassid · 10-01-2015 7:51pm

garysull wrote: »

I had a hip injection last week, no relief whatsoever. Looking at hip replacement in new year.. Anyone know about co-payments for surgery? I have health insurance but will have to find €2k myself

Have you booked this yet, waiting lists are so long even in private.

cassid · 10-01-2015 7:52pm

FB called an Irish forum for people with arthritis under 50, really good group for a rant and moan

garysull · 10-01-2015 11:59pm

Meeting surgeon Monday,
hope to get it done end of March

cassid wrote: »

Have you booked this yet, waiting lists are so long even in private.

cassid · 11-01-2015 5:02pm

Am going next month, have pre op assessment this week to get measured for the new hip.

ill keep you posted if you like, let me know how you get on with doc.

If you are under 50, the facebook group is great, I got loads of advice and a great place to moan about hip replacements when still in our prime!!!

garysull · 11-01-2015 9:24pm

[that would be great thanks, I'll let you know tomorrow

quote="cassid;93790663"]Am going next month, have pre op assessment this week to get measured for the new hip.

ill keep you posted if you like, let me know how you get on with doc.

If you are under 50, the facebook group is great, I got loads of advice and a great place to moan about hip replacements when still in our prime!!![/quote]

garysull · 12-01-2015 1:00pm

Just back from Surgeon, hip resurfacing planned for March 25

quote="garysull;93794915"][that would be great thanks, I'll let you know tomorrow

quote="cassid;93790663"]Am going next month, have pre op assessment this week to get measured for the new hip.

ill keep you posted if you like, let me know how you get on with doc.

If you are under 50, the facebook group is great, I got loads of advice and a great place to moan about hip replacements when still in our prime!!![/quote][/quote]

cassid · 20-01-2015 1:19am

That's great, you don't need the whole hip replaced. Hopefully the recovery will be short for you and will be back to normal quickly.

garysull · 21-01-2015 11:22am

Hi ,
I`ve been told to expect 6 weeks on crutches and min 3 months off work, so we`ll wait and see how it goes.
Trying to organise pre op assessments and dental check up now to be totally organised for this.

cassid · 22-01-2015 12:41am

Hey,

That is longer than I thought.

Pre op is very very detail. You even get an EEG, its like an MOT for your body. For the full hip is has to be 3 weeks prior to the op so could be the same for you.

Do you have to get the special "toilet seat", that made me feel really old.

My job are allowing me to work from home which is good and himself is going to work from home as well. Judging my the pain on my other hip now, I can see that causing problems, so best if I can keep working. Be interesting doing my job while still in my pj's!!

garysull · 22-01-2015 11:19am

Hi,
Was told to expect the same as full hip replacement. Pillow between legs, raised toilet seat, follow instructions from physio and take it day by day, no over exertions. It's a major op so don't Rush the recovery. Never had a pre op assessment before even though I've had 3 knee ops, a hernia and wrist surgery before. My biggest worry is sleeping on my back! Can't do that now!! Also keeping my kids away, they're 6 and 2.
Other than that no major worries.
By the way it's a metal on metal hip resurfacing I'm getting done.

skallywag · 23-01-2015 1:27pm

Hi Gary,

I had hip surgery myself last year, though not the same procedure as yourself, in my case it was an op to correct CAM impingement, which essentially meant shaving some of the bone on my femoral head away as the excess was causing friction in the joint and causing arthritis. I still needed an open surgery with exposure of the femoral head though. I was also on crutches for 6 weeks and told not to work for ca 3 months, though I was able to work again much sooner (I can work with a computer at a desk and even from home, so that's not much stress anyway). The sleeping on the back thing was also odd for me, though you would be surprised how quickly you adjust to it. One thing to be prepared for could be the numbness which you feel around the region afterwards, my incision was ca 10cm long, and I have an area about the size of a saucer on one side of it in which feeling is just really returning right now, i.e. 6 months after the op. It is encouraging to know that it does indeed eventually return though. When it comes to recovery for sure it is a long road, but from the very first moments you can get out of the bed and start the use the crutches you will be well on the way to recovery. I am also guessing from the age of your kids that you are a younger man going into this op as opposed to say an OAP? This will make a massive difference to your recovery.

Best of luck in any case and I hope that all goes well for you. I'll be more than likely looking at a hip replacement myself some years down the line I would think in any case.

cassid · 26-01-2015 12:14am

You might have a chance talking to the 6 year old but not a chance with the 2 year old. Mine all pile into the bed with me most nights and the hubby crawls off to another room, and its normally kicks and bangs all night. Might have to block them coming into the bed for a bit. My youngest is 5 and kind of understands. He helps me put on sock or shoes each day so he knows I am a bit of crock at the minute.

Are you awake for the op?

There is a wedge thing you can get for sleeping. Had 3 sections so slept on the back for a while.

Skallywag, 10cm is very long, how long before you felt yourself ?

I swim 4/5 times a week as have the arthrisits down the spine with two bulging discs and am in heap if I don't swim, I hope I won't have to stay away from the pool for too long

skallywag · 26-01-2015 10:42am

cassid wrote: »

Skallywag, 10cm is very long, how long before you felt yourself ?

The operation was in August 2014, and the feeling is just starting to return now really, though still not completely. I have a friend who had shoulder surgery and also reported something similar. Though it's not such a big deal really as the area which was numb is not somewhere where one would have feeling anyway really usually.

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