Arthritis forum

Monife

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

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

up for anything

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

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

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

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

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

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

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

Monife

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

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

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

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

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

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

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

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

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

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

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

garysull

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

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

[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

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

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

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

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

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

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

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

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.

garysull

Hi,
Not worried to much about kids in bedroom as they won`t be allowed in, its downstairs i`ll be worried about. As regards being awake for the op, I haven`t discussed it yet with surgeon. I`d like to see what`s going on but if he won`t let me that`s fine too.
Sleep will be a big problem I`d say as i don`t sleep much as it is. Will need all the help I can get with this.
One thing I am curious about is the need to go into hospital the day before the op!! Usually I`ve went in early the morning of previous op`s I`ve had.
Just have to deal with it I presume.
Scars are trophies in my eyes, I have plenty of them, mainly in my right leg, so another doesn`t phase me a bit no matter what size it is.

skallywag

garysull wrote: »

As regards being awake for the op, I haven`t discussed it yet with surgeon. I`d like to see what`s going on but if he won`t let me that`s fine too.

I'm really not sure you want to see & hear what's going on!

DipStick McSwindler

This post has been deleted.

skallywag

IrishFeeney92 wrote: »

If you dont mind me asking, what age group are you in? Im 22 and have a cam impingement. Im heading to the SSC as soon as I can to see what I can be do about it. My biggest fear is Arthritis or a hip replacement

I'm 40 now, first started having pain when I had just turned 38. Feel free to ask anything you wish.

skallywag

Also keep in mind that CAM impingement surgery has a high success rate, with many (myself included) gaining considerable relief afterwards. Catching it at your age also will also lessen the chance that any significant damage may have already been done, I would imagine.

DipStick McSwindler

This post has been deleted.

skallywag

IrishFeeney92 wrote: »

Thanks for the re-assurance! how did you flexability improve after it? and when did you first start noticing you had an issue with your hips? It was actually only by chance I found out this early but Ive noticed the clicking becoming worse

Well in my case my flexibility was never an issue. I began having a deep pain in my groin which would come and go, and later becoming nearly daily. I would never have said that this pain was coming from my hip at all, I could have sworn it was from the crown jewels After much assessment I was finally diagnosed with FAI CAM type, mainly after an MRI with contrast scan on my hip. I never actually have had any clicking to speak of.

How was the diagnosis done in your case?

Co. Clare Man

I am sorry to hear of youse's unfortunate diagnoses. I sincerely hope that my information might be of assistance to youse who are facing difficulties with arthritis. I don't know anything about rheumatoid arthritis whatsoever, but I know a fair bit about osteoarthritis.

Youse might wish to try taking Arthelio (containing a unique combination of an inactivated culture of Bifidobacterium Longum CBi0703 and Vitamin C specifically formulated to contribute towards normal collagen forming for the healthy function of cartilage). It is NOT a medicine; it is a food supplement, basically. Pamex distributes this to pharmacies here in Ireland. It ain't that common 'cos it is relatively new to the market and is very pricey. Youse's pharmacists or youse's GPs or youse's medical consultants may be able to advise youse on whether or not it would be suitable. It is definitely way more effective than taking Dona, though.

Youse may want to try using FlexiSEQ or FlexiSEQ Max Strength for osteoarthritis. It relieves pain, improves mobility and lubricates cartilage. Pretty much any pharmacy should have this gel stocked very frequently.

For pain relief, youse could also perhaps try using Diclac or Nurofen Gel. Sprays and/or gels from Deep Freeze and/or Deep Heat might provide you with pain relief also. Gel from BIOFREEZE might help youse also. Again, pretty much every pharmacy should have these stocked frequently.

I'd be inclined to steer clear of using Nurofen,et cetera in tablet form, because they can be very hard on the tummy when frequently used over even relatively short periods of time.

In my honest opinion, the long-popular copper wrist bracelets and/or copper footwear insoles are fairly effective.

If youse ever happen to face severe mobility issues, then you will likely want to obtain a quadraped walking cane or a three- or four-wheeled walker.

I'd strongly suggest that youse consult a fully qualified physiotherapist who can provide you with simple, yet effective strengthening exercises for you to perform at home. The same professionals who help those with sports injuries do indeed provide assistance to those with arthritis also. A physio also can perform deep-tissue massages for youse. A physio may also recommend that youse use a textile supporting brace for your knees, elbows, shoulders, back or hips. It is really best to ask a physio's advice before purchasing a support brace youse-selves from a pharmacy or an adaptive-living retail outlet. They do indeed help many people in numerous circumstances, but physios usually recommend against their frequent use.

I'd also advise that youse try going to a hydrotherapy at a specialist pool or perhaps at a hotel swimming-pool centre. That basically amounts to walking through water in a heated pool. It really does help in a big way, though!

Perhaps a holistic healer may be of assistance to youse. I've heard of holistic healing, but I dunno anything about it myself.

Finally, youse's GPs/medical consultants/physios may possibly refer youse to an oesteopath or to a orthopedic surgeon for artificial-implant surgery, if youse's conditions might unfortunately worsen profoundly.

I wish youse all the best in alleviating the symptoms of arthritis.

goolly

Thanks for the information.😍