What do you do?

[JDQuinn75]

What do you do when you’re the only one that knows that your arthritis is bad enough that something needs to be done, and you constantly have your own parents say that it’s not bad enough to see a rheumatologist? Well mine is bad enough in my spine now I have a hard time getting around at times. I’m possibly going to go the route of requesting to be referred to a PT or OT and have them get me fitted with proper measurements for a wheelchair. Do to the fact that everything else has failed to help me. I’m doing a lot of sitting when I’m home . More than I want to but have no choice but to. So like I said ......... What do you do?

[katieoxo60]

Don't no what to do, I feel the same as you . If you find a solution let me know please. It seems no one wants to deal with long term incurable disease as they have no answers.

[JDQuinn75 in reply to katieoxo60]

That makes two of us katieoxo60. Tell you what I am getting ready to do though. I’m getting ready to tell him to put in a referral for my for an occupational therapist so I can go to them and find out my my measurements are for a wheelchair. Do to the fact nothing else has worked for me. I’m not going to continue to keep pushing through the pain it’s only making it worse for me. So I figure if I get my measurements and fitted for a wheelchair I’ll at least have that to use for my worst days. There are days I’m not going to have any choice but to use that.

[katieoxo60]

Sorry for the late reply, hope you are getting on with your requests and they come through quickly. I'm still waiting for an MRI scan on my knee to verify the cause of this new pain.But of course taking painkillers is masking the cause of the pain. Eventually I think we all have to concede that if the pain is too bad then a wheelchair is often the only option. I wish you every best wish, but sadly the wheelchair won't help the pain aspect , but it might allow you to go out at least. Good luck.

[JDQuinn75 in reply to katieoxo60]

Katie, walking for me seems to make the pain worse for me at times. With this also in my hip now it’s made things worse for me. I know it probably won’t ease the pain in my spine by using a wheelchair, but by keeping weight off my joints it’ll probably help me in a long run. Plus it’ll keep me from sitting a lot at home like I’m doing now. I’m trying to avoid the sitting that I’m having to do when I’m home too. If I have to use the wheelchair in my home I will. I live on my own and do a lot of my house work by myself. But when my body tells me I need to rest then I have no choice but to sit for awhile. Or even lay down if I need to. I struggle some days just at home to push through the pain I feel every day. It’s very uncomfortable down my spine staying on my feet for long periods of time. So I feel the wheelchair is probably the best way to go for myself at this point.

[katieoxo60 in reply to JDQuinn75]

I have a freind like that who uses the wheelchair for rest on the joints. I struggle myself in respect of pain when walking , have to stay within my limits and keep the stairs to a minimum, I have the added frustration of COPD effecting my walking too. You must do what is best for yourself and doctors need to accept this. I still do my own house work myself in spates as you say but I have tried a cleaner coming every few weeks which isn't much use as they don't do any of the heavy cleaning. Solutions are not always simple are they? Enjoy your day best you can will speak to you again soon.

[JDQuinn75 in reply to katieoxo60]

I would try physical therapy but I know that only helps for a short amount of time. So instead of going through pt first I’d just rather go on and get fitted for the wheelchair and get that behind me so the wheelchair can be ordered for myself. I know it’ll probably take awhile to be built to my specifications that’s need to fit me like it should. My neurologist tried to get me to go through physical therapy but I didn’t go through it at the time. But this was before the middle of my spine was bothering me like it is now. Yes it would be expensive for this wheelchair but I think it’ll be well worth the investment in the long run.

[katieoxo60 in reply to JDQuinn75]

Good Luck

[Polski in reply to JDQuinn75]

'Physical therapy only works for a short time' No. That is a fallacy. Physical therapy is about teaching you how to move in a way that builds up your muscles and so strengthens the joints, so you can move more easily. A good therapist will also teach you how to exercise well at home, so you treat yourself, rather than having to pay for someone else to do every exercise with you. Exercising everyday in the way you are taught, will help you move with less pain every day.

[helixhelix]

A out a year or so ago you were talking about having been referred to a physiotherapist to start a programme of structured exercises. Did you ever follow through on that? I really feel that at your age you should be trying everything you can to help your body cope with the osteoarthritis, rather than thinking about wheelchairs. Once someone starts using one for any length of time it becomes hugely harder to regain strength. And it is quite remarkable how much muscle strengthening can minimise pain. Physical therapy has helped me for over 15 years now.

Have your doctors assessed the damage to your joints in terms of the opportunity for surgery or joint replacements? Disc degeneration is hard to deal with (I have it myself) but sometimes there are options.

[JDQuinn75]

My doctors are ignoring the obvious with the issue at hand I can’t get them to do anything so at this point I’ve got to do what I think will help me .

[JDQuinn75]

Helixhelix, I have tried everything you can possibly think of and nothing has helped mine . I refuse to be operated on . I told katieoxox60 that I’m done trying to get doctors trying to listen to me. Also told her my next move was going to an occupational therapist and get fitted for a wheelchair . So I can keep it on hand for my worst days. I’m wondering how I’ll feel this summer. Last summer was just as bad as last winter. Had one morning I could barely get undressed and in the shower to get ready for work , and it was just as bad trying to get out of the shower and dried off. Plus I’ve had some day that both of the tops of my legs just plane hurt. Don’t know if it’s due to my osteo or something else Bit when I have that it last a good part of the day too if not two or three days in a row.

[Catseyes235]

I was just wondering what it is that you do want that you are not getting? I think if you can clarify that to others it will be clearer to you. You seem to have been offered surgery so just wondering why you are so adamant that you don’t want it?

[JDQuinn75 in reply to Catseyes235]

The my family doctor hasn’t done anything nor has he suggested anything. Now my other doctor I see has only had xrays ordered for my lower spine plus one was done on my neck two years ago. But that’s all so far. But this discomfort is starting in my neck now on the back part of my neck. Two years ago it showed just minor degenerate in the neck area. I’m wasn’t feeling it like I am now. I guess if I start getting tingling feeling or weakness I’ll know I’ll probably have to have it operated on then . That hasn’t come into play as of yet. But no I don’t want to have to go through that.