To at what point?: I've got a question for... - Arthritis Action

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To at what point?

JDQuinn75 profile image
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I've got a question for this has always been on my mind ever since I was diagnosed with osteoarthritis. To at what point should a person consider or start thinking about using a wheelchair? My arthritis seems to have gotten worse this year than last year. I've been dealing with this since the middle of 2013. It has seemed to have spread rather quickly in the last year. Medications don't seem to help enough for me. I'm loosing sleep during the night and having a tough time getting around during the day. I'm not giving up but this seems like the last option. Osteo has not been my friend this year at all what so ever. She's really been a bitch this year. Has anyone else consider on doing the same thing when there osteo gets out of control? Even if it is just for a few days til the flare ups start to calm down. But I've also read in more than one article that osteo can do this to an individual at some point. I'm only forty and really don't want to be confine to a wheelchair but if I have to use one off and on to help me get around better I will. Especially when my hip is very uncomfortable as,well as my knees and lower back. I need some anwsers. Since March of this year it's spread to my shoulders , hips, knees and lower back. What should I do about this? It seems as of right now that hard surface areas seem to be bothering me the most right now like parking lost and floors in department stores. I'm the most comfortable in my own home. Because it's not a hard surfaces area below my feet. It's mostly carpeted areas with exception of my kitchen area and bathroom. The yard isn't to bad but I do get uncomfortable out there as,well, especially if I'm out there to long in the yard. Any suggestions would be greatly appreciated. Thank you to all that gives me any ideas or suggestions to my post. Also things that you have tried in the past for your osteoarthritis thst have help you please let me know. Something tells me that I'm dealing with more than just osteoarthritis the way it's acting right now. Thanks again

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JDQuinn75
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flow4 profile image
flow4

Hi JDQ, the trouble with wheelchair use to avoid pain is that your body really does need movement and exercise to be well. As a general rule, the less you move, the more you hurt, and the less you move, the less you become *able* to move - you can soon get into a downward spiral. It is really hard when you're dealing with chronic pain, because there's a strong urge to avoid movement that seems to trigger or worsen the pain, but you really do need to find ways to keep moving. Personally, I would only use a wheelchair if it helped me move about and exercise *more*.

I have osteoarthritis (confirmed by X-rays) in my feet, knees, right hip (before it was replaced last year), spine, hands, and jaw. I also have rheumatoid arthritis, which is only just being treated and has caused me a lot of problems over the last year or two. The things that have helped me (in no particular order) are:

- Swimming. I started small (just a few lengths at a time) and went 3-5 times a week, and gradually built up until I could do 30-40 lengths regularly. Because I exercise in water so much, I can minimise walking and still stay reasonably active.

- Aqufit. I can do movements in the water that would be totally impossible on dry land. Moving in water reduces my pain significantly, by 80-90%, and improves my mood a lot. :)

- Heat. I use a warm jacuzzi and sauna regularly, always after and sometimes before swimming, to relax my muscles. I have an electric blanket on my bed.

- Weight loss. I have lost about 12kg/25lb, and it's definitely the case that the less I weigh, the less I hurt.

- Eating well. I have almost cut out processed foods and sugar, and eat lots of fresh fruit and veg, and do seem to feel better for it. I don't eat meat, but don't know if that makes a difference, because I haven't had it since 1987.

- Drinking lots of plain water. I def hurt more if I drink less than 2.5-3 litres of water a day.

- Avoiding alcohol seems to reduce my pain too.

- NSAIDs help now I've got the dose right.

- Joint replacement. You mention your hip hurts particularly, and I wonder if you've had it x-rayed recently? Hip OA can worsen quickly. A hip replacement, if you need one, will reduce your pain very significantly.

You also mention that you 'flare'. In my experience, OA does not flare, it is constant or gradually gets worse. RA does flare though, so I wonder if you have been checked for that? Treatments for RA and OA are different, so accurate diagnosis is important.

I hope you find some relief soon. Good luck!

JDQuinn75 profile image
JDQuinn75 in reply to flow4

Flow4 I have been tested for RA twice with the rheumatoid factor twice and both times it came back negative. When I saw the rheumatologist for the first time he check my symptoms as,well as the pulling and tugging on my shoulder joints , knees ect my hands stay red on the top all the time anymore. I'm wondering if I'm not on enough medicine to control my symptoms . But have the pain all day everyday is getting old real quick. My lower back has been bothering me all day today. Staying on the parking lot all day makes it worse than it was before I got there that morning, I'm noticing as,well. As for my feet they're only feeling the best when one I'm barefoot and two I'm off of them for the afternoon. It comes and goes with my shoulders, but I'm always feeling it in my knees. The part on my feet that hurt the most is the arch. At times it's my toes that hurt to much to bend them. I had thought about looking into a home gym like a bowflex, so I wouldn't have to payfor gym fees. I do keep comfortable shoes on but my feet have gotten to the point that they're happier with nothing on them. I really haven't been told by my doctor on what exercises that I should do. I do have a wii system with the wii board . I know they have some exercise programs out that might work . As far as my eating habits go I usually eat things like pork, chicken or seafood and every so often I'll have a steak. I take a water bottle to work with me everyday. With me by myself I usually find the easiest thing to fix for one person. Bit I'm at the point right not to possibly contacting my Dr. and saying. hey something else needs to be done to make me more comfortable. I'm miserable right now due to the pain I'm having. I don't want it to get to the point that I'm in tears again like it did with me last winter. I'm afraid that is exactly what is going to happen if I don't figure out what to do soon. We'll see I guess.

flow4 profile image
flow4 in reply to JDQuinn75

I'm sorry you're suffering so much.

Negative blood tests for RA do not mean that you don't have it - around 25% of people with RA have normal RF blood results and around 10% have all normal blood results - including me. It does make it harder to get diagnosed though, unless you have obvious swelling... I have been tested 3-4 times, all negative, but then hand X-rays and ultrasound showed erosions and synovitis, and the rheumatologist changed his diagnosis to include RA. I definitely think it's worth you getting another opinion. Good luck!

JDQuinn75 profile image
JDQuinn75 in reply to flow4

Flow4 I'm not a doctor but the way I've been feeling these past few weeks has made me think that it's gotta be more than just osteo that I have. I don't have inflammation but the aching is constant 24/7 for me. I haven't had an ultrasound like you did. I've just had the x rays and blood test done for RA. The past 2 night I've been using wheat bags to try and ease the pain. It hurts to stand as,long as I have to for work . It's starting to get unbearable. I'm running out of options other than to go see a different rheumatologist. I may be doing that after the holidays. I'm not convinced it's just osteo. But then I may be wrong. It's just the symptoms are coming rather quickly. Quicker than I think it should for osteo. It's one of the main reasons I was thinking about a wheelchair for me. I'm tired of popping pills in and it not help me. I'd only use the wheelchair for my worst days. It wouldn't be on a daily basis unless I had to til my symptoms calms back down.

flow4 profile image
flow4 in reply to JDQuinn75

Yeah, it sounds to me like there's something else going on too... I see your osteo was described as 'mild' in the summer... Well, mild osteo doesn't usually hurt that much, and it doesn't get that much worse so quickly... Odd! Hope you can get some answers.

JDQuinn75 profile image
JDQuinn75 in reply to flow4

Flow4, just to give you an idea of my time line, March I saw my gp for my yearly physical at the time it was just my hands and feet bothering me. Than I say By mid April I was then feeling it in both shoulder, as well as my knees and elbows but not my hips or lower back until mid June early July. To me thst sounds rather quick. Osteo is a slow progressing arthritis. RA may develop quicker than OA I don't know. But I have read that RA affects all the ares where I currently hurt right now. Including the ankles as well. Something tells that me also I need to have a different test ran to rule out ra other than just the RA Factor and x rays. X rays on my hip looked normal when I had them taken back in May I believe it was. I feel like I'm paying for useless test that have been taken right now. I've spent over 500 or more for useless test and xrays. And prescription drugs that haven't helped as well. The four drugs my doctors have had me try are nabumetone, diclofenac, Mobic and Naproxen as well. Naproxen seem to help the most but still not enough to keep me comfortable. So my question is this. what next? I hate to make another appointment for useless test again that all its turned out to be so far . I don't want to ho into work tomorrow because of that parking lot I have to be on all day for 8 hrs. I'm just uncomfortable all day while at work all day every day. Not to mention I didn't get alot of sleep last night either because of the discomfort I was,having. And still having it as,of right now.

flow4 profile image
flow4 in reply to JDQuinn75

As I said, it does not sound like it's 'just' OA to me either. The trouble is, diagnosing RA or another inflammatory arthritis can be difficult and can take time, if your blood tests are normal. Make sure you have had blood tests for other inflammatory markers, not just RF. Your CRP and anti-CCP need testing. But even these can be normal, so really it is clinical examination that counts. Sometimes (as in my case) it can take several years to be diagnosed.

I suggest you join the NRAS forum here too. It's a British RA charity, but there are members from other countries too, and you'll be able to get info and experiencesfrom lots of people in similar situations.

JDQuinn75 profile image
JDQuinn75 in reply to flow4

Flow4 , I'm finding as of right now especially at work , if I'm standing longer than an hour or so my feet and hip start to bother me . It actually helps me more if I stay off my feet for awhile and get rested back up. Lately my hip has been bothering me quite a bit. I've not been back to my rheumatologist since August. I'm also not taking anything for the pain right now. I'm tired of not able to do alot without hurt in the process. Ibuprofen, advil nor has Tylenol helped me what so ever. So my only choice is to make another appointment with my rehumatoligist so I can get my prescription refilled.

flow4 profile image
flow4 in reply to JDQuinn75

It sounds like you need something stronger than Tylenol etc. I don't know how it works in the US, but here in the UK, your GP can prescribe NSAIDs, which would prob be your next option.

JDQuinn75 profile image
JDQuinn75 in reply to flow4

Flow4 the last prescription I was on was the Naproxen 500 mg it helped me some but still not quite enough to make me comfortable. But on my last visit my rumy had said if that didn't help enough or work at all he'd probably have to put me on the celebrex witch is very expensive. It looks like I'd have to go that route maybe. Because I'm staying very uncomfortable right now. Tonight I'm feeling it in my hip ,feet , shoulders , lower back and elbows as well.

Sorry that you are in a lot of pain. Have you never been seen by rheumatology clinic to see if it is more than osteoarthritis. I was diagnosed with osteoarthritis in 2012 in my hands. I have been getting more pain in other joints a lot this year and was referred to rheumy clinic to see if it was RA but turned out to be psoriatic arthritis I am not saying it is the same for you. I am 57 and I am thinking of getting a wheelchair because I have COPD as well and find it very hard to walk with both conditions. Take care.

JDQuinn75 profile image
JDQuinn75 in reply to

Bless 23 I've had osteoarthritis since 2013 .I has started to get worse since March of this year. I'm feeling it in my hip, knees lower back shoulders , feet and yes in my hands is where it started 2 years,ago. I've been looking at the Tilite wheelchairs due to the fact that they are lite weight and not as heavy as some of the others. I'm at the point right now that I can barely get through a days work without hurting real bad in my knees lower back and hips as,well. I was diagnosed back in June with early signs of osteoarthritis but it seems to be getting worse since June. I was 37 when I started getting signs of osteoarthritis in my hands at the time . Now I'm 40 . Good luck with yours.

JDQuinn75 profile image
JDQuinn75 in reply to

Bless 23 every comment I'm getting back after I mention that I was thinking about a wheelchair for myself everyone is saying to try and avoid using one. But the way I have felt this year since March, the pain in my lower back hips and knees is just awful. That's why I was considering it for myself. I'm 40 now and I never thought I'd be dealing with this early. But osteo and rheumatoid both run in my family on both sides. But none of my family members have had to use a wheelchair with theres. I may be the first. I'd only use the chair on my worst day and if I was going somewhere that I would have to do a lot of walking. I'm finding out now the more I stand and move around now the more my arthritis acts up. So I don't want to push it anymore than I actually have to, if you know what I mean. I stay pretty comfortable in my own home its when I'm away from the house and on hard surfaces that it acts up the most on me right now. This winter isn't looking good for me right now the way my arthritis is acting up right now. We'll see tho I guess.

Thanks your welcome. Good luck with yours

JDQuinn People are entitled to there opinions but only we understand how we are feeling. I was on holiday a few months ago and my breathing was so bad that I had to hire a wheelchair from the Red Cross. Or I would of had to stay in the hotel all the time. I know exercise is good for you. I never used to let my medical conditions affect what I did I would go to work when I couldn't even get dressed without getting breathless. But there comes a time when you have to say enough is enough. And live your life the best you can. So what if you get a wheelchair what has it to do with other people as long as we still exercise I don't see any thing wrong with it take care.

JDQuinn75 profile image
JDQuinn75 in reply to

Good afternoon Bless23, I just read your last response you sent to me this morning. I very much agree with what you said. I have to tell ya tho since getting home from work my whole body hurts like the devil right now , all the way to my feet. Today is one of those days that I wished that I had a wheelchair to be using for the rest of the evening. My back and hip are still giving me trouble right now as well as the top of my feet and ankles as,well. I think if I have to put shoes on the only thing that will go on are my moccasin slippers. I think I will be asking my doctor about using a wheelchair tho now that my symptoms are getting worse do to cooler temps. I had another person on here recommend wheat bags to me . I went on amazon website and bought 3 of them, boy they do the trick to ease the pain after a long day if I don't have anything else to use. I recommend you do the same if you don't have any get you a few . I used mine last night for the first time and it did ease the pain after putting them in the microwave for a minute and a half. Staying barefoot while at home helps me too and off my feet as much as I can while at home. But yes I am going to look into a wheelchair for myself as well . I've already looked on spinlife at the chairs. They're pretty reasonable in price but I would still have to get my measurements for the right fit for myself. A physical therapist would have to do that I think. Don't suffer anymore than you have to if you need a wheelchair get it. As for me I'm going to do the same if the pain gets worse with me. Have a good evening J. Quinn

Rosepetal60 profile image
Rosepetal60

I feel it would be a good idea to do some research on the different types of wheel chairs (and mobility scooters) so that you are ready for your final decision. I researched for 2 years on and off online before I got a mobility scooter. I haven't used it properly yet as my symptoms vary from month to month and initially will only be using it for getting around large events. But Two years ago, I couldn't put one foot in front of the other and it scared me. But with the help of an excellent Traditional Chinese Acupunturist, I improved mega over the months. But just felt it would be better if I was prepared for when it happens again because you need a certain amount of mobility to go round showrooms trying this type of equipment out to suit your needs and body.

If you have a car and can't do lifting ( I can't) then you can get a hoist fitted to your car to do the lifting in and out of the wheelchair / scooter. But as I say, much research needed first. Even now, I feel I should have done more research as my estate car boot lid opening is on the small size. Did not think about this when I bought it 2nd hand b4 researching the scooters.

Certainly consider traditional Chinese style private Acupuncture. As it treats your body as a whole. NOT to be confused with Symptomatic type of Acupuncture that can sometimes be available on NHS and other places. But if you feel you want to try it, look for a practitioner with advanced qualifications and many years of experience. Message me if you want any help on this

JDQuinn75 profile image
JDQuinn75 in reply to Rosepetal60

Dear Rosepetal60,Thanks for the info on scooters and different wheelchairs. I've been looking at different ones for quite some time now. It seems that my arthritis is getting worse and more aggressive. I can't stand on hard surfaces for but a short amount of time right now,it bothers both my feet and hip as well after awhile. As to as far as what I've looked at for myself in wheelchairs, I've looked at the gt on spinlife site but I've also gone on the Tilite site and looked at what available. I looked at both the train and zra model wheelchairs. I drive a small compact car , it's a dodge dart . The pain I'm experiencing right now is in my hips ,feet ankles and knees . I could of used one today for sure . I was on my feet to long today and now I'm paying for it. I think it's going to be pretty useless to go back to a rheumatologist to get more medicine for the pain. Otc drugs haven't helped enough either. I have that about starting to use crutches instead of a wheelchair but the more I thought about it I thought it would just make thing's worse. So the only logical thing to go with is the wheelchair. I'm going to try and stay away from a power chair because I'm still good enough that I can push one by the back wheels. I'll let you know what I end up doing when I make my mind up.

JDQuinn75 profile image
JDQuinn75 in reply to JDQuinn75

Rosepetal60, So what's this Chinese acupuncture that you were talking about? I'm wondering if I could find that where I live or not. I'm still having discomfort with my hip , lower back and feet as,well. I need something to help me as soon as,I can find what will work. Even while I'm off my feet tonight I'm still very uncomfortable in my lower back hip and feet. I was also reading up on spinal stenosis this afternoon when I got home because I'm still have the warm sensation feeling on the side of my right leg. I was wondering if that may be starting in my lower back and that why I'm getting that feeling down the side of my leg.

pat66 profile image
pat66

Hello, I too have been toying with the idea of getting mobility help but more only the lines of a scooter I posted something awhile ago about it and true to form the fantastic members of this site offered great advice my issue was at 36 was it to young to get a scooter ,I am kind of a shamed to say I asked because I do need one but was worried about what people may say etc.

Since that post way back when I have done many things to help better my days and would recommend the same for you, if you need it and think it will help and you have the money do it.

I have been looking into those chairs that tilt you up to help movement and a scooter its only funds stopping me now not what other may think

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