Pain in the middle of the spine - Arthritis Action

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Pain in the middle of the spine

JDQuinn75
JDQuinn75

For the last I’d say three years now I’ve been having discomfort in the middle of my spine from my OA that I was diagnosed with in 2015. Symptoms started about a year after being diagnosed. I’ve made my GP aware of it but he’s not really wanting to do anything to ease what I’m feeling on a daily basis. My fear is what if this in some months , years ect. down the road start to affect my legs and they start to get weak do to this. I’m only 43 but have had this fear ever since the OA started in my spine of loosing my mobility. Should I see a rheumatologist about this or get on my general practitioner about it and say something needs to be done before this does get worse? I’ve mentioned it to my general practitioner on several occasions each time nothing has been done. It’s minor right now , the pain is. But it’s noticeable every day while I’m on my feet. The thoracic area is where I’m feeling it. I’ve read this can affect the spinal cord if it gets bad enough. Witch I’m fearful that it will down the road. Any suggestions? Or opions will help. Thanks

41 Replies
oldestnewest

Hi JDQuin :)

Firstly, can I ask where exactly are you reading this information about your spinal cord?

Secondly, you mentioned degenerative disc disorder in your cervical spinal area (top of the spine) in a previous post but told it was mild.

You also mentioned seeing a rheumatologist, and about your OA and your mobility, just how bad hasthis gotten for you now? and other than your doctor, and previous specialist(s) for your diagnosis, have you been seen by anyone else? (like a physio or occupational therapist).

Generally, with the NHS, a patient has to be referred to a rheumatologist, its not like we can just phone them and request an appointment, although SO many of us wish we could :)

I ask these things for specific reasons.

I was in my late 20's when first diagnosed with arthritis in my hands. Back then, my hands were so bad, I couldn't even use a knife or fork, and had to resort to paper plates because I lost count how many times I threw a plate in frustration. (Luckily I lived on my own so no-one really saw me like that). That lasted about two years before it went dormant (into remission), and thankfully, for over a decade.

Little did I know what my future held, and I was very naive about arthritis and computers weren't as readily available as they are now. I guess to a point, at that age, I didn't want to know.

Years later .... I was the same age you are now when I was first referred, by my doctor, to see a rheumatologist. She told me I have OA in every main joint. But it stopped there, I wasn't given any information about my condition at all and she didn't prescribe or suggest any types of treatment or medication for it.

So, as with my initial visit back in 20's, I came away feeling somewhat let down and not knowing where to turn or who to talk too.

I've heard many good things from others on here about their visits to rheumatologists, so its possible I was just unlucky, or it was that specific hospital.

From the age of 43 to 50, I have a list covering every line of A4 paper of all the different medications my doctor tried me on, just trying to manage my rapidly, progressive OA and spinal pain.

And like you now, I was also seeking answers, but please, please don't believe everything you read when researching. Keep an open mind and keep searching, especially about your spine, what every part does and is responsible for, and especially how your spinal column and discs blend with the spinal chord, but also, differ.

After reading a lot, both UK and USA sites, you'll start gaining enough knowledge to be able to not only tell your doctor which specific areas of your spine hurts, but you'll have a better understanding of what they tell you if they send you for digital x-rays and read the results to you.

It won't seem so scary then :)

When I moved areas, my new doctor requested a full spinal scan, because as it turned out,

at my previous hospital, the musculo-skeletal team were using the same one lumbar x-ray they'd requested in January 2012 as they were in November 2017 ! In 2012, they told me I had (like you) 'Mild disc degeneration. But they were still saying the same, 5 years later, and still referring back to that one x-ray. (I have an official complaint in the works about that)

But after moving areas and getting a new doctor, she sent me for a full scan type of x-ray.

My results showed in October 2018 (just 11 months after the previous hospital were still saying my spine condition was mild) that my lumbar was definitely not mild, it is extremely severe, as is the cervical area (top of the spine).

She also told me that OA had now spread from being just in my joints, to being throughout my spine to now.

I have an appointment (via my doctor) to see the Pain Management team in a little over 3 weeks now (after waiting 7 months for this), as they're now the only ones who can treat and manage my conditions as well as prescribe medication that my doctor isn't permitted too.

I told you my story above because while so much, for you, now, seems like a never ending battle of getting the tests needed, please know you're not alone with this. While my symptoms now are different to yours, it in no way means you'll end up like me, sleeping in a hospital bed because I can't lay flat, having to use a cane, then crutches and now I have to (most of the time) rely on a wheelchair because the OA in my knee joints makes my knees suddenly go into spasm so I can't put even the slightest pressure on it, and that my hips and lower back are in agony with spasms if I bend over (even just quickly to pick something off the floor 4 or 5 times max) or stand still longer than 5-10 minutes. I can't even manage the stairs in my house more than 3 times max a day now.

Everyones OA and disc degeneration is different. Different things trigger it, different things make it hurt, or ease in each of us.

The last thing I want you doing is reading something and thinking "Oh wow, that's going to be me", because, as I said, every case differs.

In your research, look into nearby hospitals, not just the one where you live. See what each offers. One may have a pain management team, the others may not. Look to see if any have a hydrotherapy pool in their physio dept, this is really gentle exercise, with your assigned physio, but in waist deep warm water.

I noticed on one of your other threads where one person replied. They suggested exercise. Please don't. Not unless you fancy an evening in pain.

While exercise is good to help prevent arthritis (when you don't already have it), many exercises, unless recommended by a physio, may actually make your spine and legs hurt more.

When you live with a condition, like this spinal condition, only you will know what you're capable of and aren't. Only you will know what triggers the pain a little or a lot, and what eases it, because you're the one living with it every day.

Keep on at your doctor. Ask him/her about hydrotherapy, physio, getting an MRI of your Thoracic (where you're saying the pain is now that you're feeling), ask about anti inflammatories and stronger pain managing medication, ask about referrals to specialists and keep asking, make sure your doctor knows how much this is now affecting your quality of life and that you'd like to know the full extent of your 'current' condition so it can be managed properly and you're not in so much pain.

Sadly for us, who are in chronic pain, our doctor may see so many patients a day or week who have read symptoms online, convinced themselves that's what they have, and we're the ones left trying to convince our doctors that our symptoms are very real, and basically that we're not making it up, its not "all in our head".

Many on here can tell you how they'd been made to feel this way, or still are. Its awful for us that we constantly have to fight so hard to be taken seriously.

But you will get there :) It just takes what can feel like an uphill struggle and a lot of waiting lists, but don't lose hope and keep researching your condition.

I know I've written a lot here, but I was trying to also cover some of your other posts too. I hope I've been able to give you something positive in all of this and that you do know you're not alone with the OA and spinal pain.

Take things easy, and I'm usually in the OA Action community on here if you ever need to talk, or have any questions.

(Sorry for the typing errors. Its actually hot in Wales for a change, but the heat <and cold> triggers both the arthritis and Raynauds syndrome in my hands, making it harder for me to type on my phones' small keypad)

JDQuinn75
JDQuinn75
in reply to kohai

Good morning Kohai, I’ve been fighting this for the last three years if not four. Like you my OA is also in my knees . I have some days this I get tired quickly more so than others. I see myself of having to rely on a wheelchair as well. I’ve considered on investing in one for myself to have on hand when I feel I need one to get around. I have some days that its just unbearable to just move around on foot. I’ve had days and that mine is so painful in my spine it’ll drop me to my knees. Another reason I’ve considered getting a wheelchair as well. I find myself sitting a lot when I’m home do to this. It’s not allowing me to do what I need to or want to. I feel it’s dictating on what I can and can’t do . It’s very madding. I turn 44 in September. It’s been confirmed that the OA has s in my right hip lower spine and n the neck area as well. X rays have shown this. My middle of my spine hasn’t been frayed though. But I feel it there now as I type this message to you to respond back. It’s very uncomfortable. I’ve mentioned this to my fokes time and time again and the response I get back from both of them is yours isn’t bad enough yet to have a doctor look at it. In 2015 I went to the Rheumatologist without letting them know I was going so I could find out what I was dealing with. At that time the OA was only in my hands , feet and shoulders. A year later It started in my spine. Two years ago I found out it was starting in my neck. I was 37 when I first started seeing signs of it in my hands. I’ve tried over five different medicines. Neither one even touched it to ease the pain. I’m not sure if physical therapy will help me at this point or not. It’s a loosing battle right now for me. Jason

kohai
kohai
in reply to JDQuinn75

Hi Jason,

I can so empathise with you, on literally everything you've said as I've been through the same issues of being told "Its not bad enough yet".

I'd drop to my knees too if my knees weren't as bad as they are, it feels like everything we do, or want to do always has painful consequences though.

As for the wheelchair, yes, you could buy one, or you can phone the Occupational Therapy dept at your local hospital and ask for one. (no doctors referral needed this time :) )

They then come out, measure your leg length, height, estimated weight and pass this information on to a company like Invacare (who supplied mine).

Its free, and if any repairs need making, you just phone the O.T dept again and they arrange for an engineer to come out to you. The engineer will always carry a spare wheelchair in his van incase yours needs to be taken away, so you won't be left without one.

This wheelchair is then yours. I tend to take the side arms off, I find they rub on my inner arms too much.. I'll also remove the foot plates at times, if for example only my back hurts.

Two other pieces of valuable information to bear in mind.

You'll be able to use Ambulance Transport for all hospital visits. Its free, they (the paramedics/volunteers ) collect you from your door and drop you off at the ward you're going too, then collect you when you're ready to leave and will even wheel you over your front doorstep so you're inside your home, even though they don't usually enter unless you're struggling to get out of the house. Then they come in and help. Let me know if you'd like or need their number, but it is hospital and specialist appointments only, they don't take people to doctors appointments. They use the same type of ambulance the normal ambulance crew use, but has the word Transport added to its sides, and has special wheelchair fitted spaces, with clamps to keep your chair from moving, and seat belts, with virtually all of the normal ambulance medical equipment removed.

Also, because of your condition, if you do own your own home, the O.T can arrange stair lifts or elevators to get you up and down stairs, raised toilet seats, with a frame to hold on too, any grab rails you feel you need, and where. Its all free and they can assess your needs, what you feel you need to help you etc.

If you don't own your own home, you can request a disability adapted house or bungalow. (Bungalows are much smaller and generally a one person accommodation due to its size)

But they're options you can explore if you feel you'd benefit from them.

Something else to consider and is also your right.

Look at changing doctors and ask if you can be seen at a different hospital.

I understand this can be stressful, I was with my last doctor for 8 years and really didn't want to leave after moving towns, but also found, if I hadn't, then I wouldn't have the x-ray results I have now, or know its severity.

You mention basically going round in circles being told "Its too mild to do anything yet".

After my x-ray results came back, my new doctor told me how surprised she was that I wasn't paralyzed yet!!!!

Yet still nothing gets done.

I get the impression we have to have very specific set of symptoms before anything major happens (this is purely my guess going on years of snippets I've heard being said to me).

Things like double incontinence, continued numbness in one or more areas. I really don't know enough about that side of it to pass on to you Jason. :( I wish I did, because I really do feel for you and the pain you're in, the frustrations and anger at not having your body work as it used too. I've lived what you're going through now, and still am.

If ever I don't reply quickly to you, please know its not for want of trying, it just means my pain tolerance level was exceeded and the pain meds I have for that have knocked me out. But I will always answer you as soon as I can :)

See :) You're not alone. Finally someone is and has been experiencing more or less the same as you, so I will do whatever it takes to help you and be here for you as much as you need ok :)

(except the times I've been knocked out, which, depending on the strength I take and severity, can be anything from 2 hours to 9 hours).

,

JDQuinn75
JDQuinn75
in reply to kohai

Good evening kohai, I read over everything you had in your last message. Ya I know I’m probably going to have to measured and fitted for the proper fit of my first wheelchair. Not knowing what my current measurements are. The last few years I’ve dreaded for the weekend Byers’s season to arrive. But last summer wasn’t good for me either. It was a very hot and humid summer last year here where I am. I don’t think I’d choose a fold up wheelchair over a rigid wheelchair do to the fact they’re heavier that a rigid one is. I think the way to go when looking into getting one for myself is the lightest I can get. I’ve looked at the TiLite rigid wheelchairs. They’re titanium plus I hear they’re very comfortable and smooth riding . As much as I hate to go this route I feel like it’s probably the bear way to for several reason. One to keep me from hurting as much and another my safety as well. This way I don’t have to worry about knees giving out or my back dropping me to my kneed when I least expect it to. The quickie chairs might be an option and less cheaper than TiLite I’ve looked at a couple of them as well. My whole body feels tired This evening so I think I’m going to Slip-On my pjs in a couple of minutes to get more comfortable. I find that’s the only thing that feels good when I feel the way I do tonight. Well I’m going to go for now so I can stretch out for awhile and watch a little bit of tv before I go to get for the night. Have a good one. Jason

kohai
kohai
in reply to JDQuinn75

Thanks for the reply Jason :)

Hope you had a less painful night.

Sadly I had rather a painful one so now, at 7am-ish, I still haven't slept.

I'm going to take my morning meds now and try and get some sleep. I'll reply again later (to your post).

Enjoy your day as much as possible.

Julie

(kohai)

JDQuinn75
JDQuinn75
in reply to kohai

Good morning Julie, I’m up and ready for another day . It’s almost 4 am here now, I’ll leave here about twenty to six to head for work again. Sorry to hear that your arthritis is acting up this morning. Right now mine isn’t acting up but that doesn’t mean it won’t later on. I’m almost positive that it will by the time it’s 730 or 8 here. Usually after I’ve been on my feet for at least an hour it starts up. It makes it a long day for me. Like I’ve said before only a sitting position makes it comfortable for me , for the middle part of my spine anyway . The cervical spine are as of right now I’ve only had one day that it was starting to feel a little achy on the back of my neck. That one afternoon it was tender to even touch. I haven’t felt it again in the last few weeks but I know eventually that I probably will again. I’m always checking to make sure that I won’t on what ever day it is. We’ll gotta go for now Julie. I’ll get back with you later on this morning. Have a good one. I need to ask you Julie. Is your wheelchair a fold up or is it the lighter kind that just has the loop for your feet to be on. Referring to the rigid type wheelchair that the back weeks also can come off . Just wondering Jason.

JDQuinn75
JDQuinn75
in reply to kohai

Kohai, Good morning, Hadn’t heard from ya in the last few days. I hope the pain you mention in your last response to me has subsided or at least eased up some. I’m moving a little slow this morning and still in my pjs. I’ve had a few achy days this week myself. Its probably do to the storms we’ve had come through this week. We had another one come the last night. I was exhaust yesterday by the time I got home from work. Probably the one part of me that hurt the most yesterday was that area I told you about in my spine. Plus I was feeling it in both of my feet and ankles as well. Well Ms Julie I guess I’d better go for now hope you’re day is going good for you so far. Have a good one. Jason.

kohai
kohai
in reply to JDQuinn75

Hi Jason,

I'm so sorry to have left you hanging for a reply. My pain level over this past week has gone way over my pain tolerance level, and even the meds that normally work in calming both the spasms and pain, haven't touched it this time.

As for my chair, the seat cushion comes off so the middle of the chair can be pulled up, bringing the wheels either side together (so it can be laid flat or kept in a narrow space. Both earns and legs of the chair are detachable, the back of the chair folds down backwards.

There is a thick double velcro strip which goes through two loops, one on either side of the foot rest. This is primarily to prevent the foot going too far back and catching on the front wheel. (one on each of the foot rests).

To be honest though Jason, I do find the foot rests on these chairs, especially for someone with chronic spinal pain, quite cumbersome because, for example when I go to the doctors the foot rests hit the door first, meaning I have to lean forward, which, as I'm sure you're aware, can be quite painful. Its hard enough as it is to lean forward while sat down, but to then have to try and push a door open, and quickly wheel in a bit, then push the door some more, all while leaning forward, because the foot rests get in the way... it can be a problem. I've seen chairs where the foot rests are straight down, instead of stuck out in front, but I'm not sure how the arthritis in my knees would react to that.

Is there a store near you where you can at least try out the chair first?

Buying one without knowing the pros and cons of it first could get costly.

If you find a chair you're pretty sure you're likely to get, take a photo of the chair (a photo of where ever its being advertised (like a magazine) and post it on here. Someone may have the same chair and be open to offering advice on it?

Have osteoarthritis in my joints. Also c5disc out. Curvature of my spine bottom two left discs prolapsed. Had two spinal operations when was young. Disc removed bottom left. Fusion on lower spine. Say now all down to wear n tare. Wish now that didn't have the two operation. But to late for that now been like this for a long time. Am aged 63 now. Find it hard most times todo simple things.

kohai
kohai
in reply to Deggauk_12345

Oh wow that sounds awful.

When was the last time you had an MRI or x-rays? or saw a specialist

JDQuinn75
JDQuinn75
in reply to kohai

Kohai, I’ve only had xrays not an mri. It’s been pretty painful this week in the spinal area. Very uncomfortable. Don’t know what to do other than to go on and purchase a wheelchair for myself. Witch I don’t want to do.

kohai
kohai
in reply to JDQuinn75

Sorry Jason, I should have been more clearer in my last post.

The last one was meant Deggauk_12345.

Jason, google images for the different types out there. If you're in the UK, both the NHS and Red Cross provide wheel chairs.

This is the one I have (the hospital got mine through Invacare, who also provide maintenance and replacements for free)

google.com/search?q=NHS+Inv...

Even if you get a free one first, it'll give you a much better idea of what you do and don't want on yours. Also, if you explain to the provider what it is you're after, they may be able to accommodate you. I don't know what wheelchairs the nhs provides but I guess theres no harm in asking, plus you won't have to wait long for it either. Just make sure to let them know you need to be shown how to use it getting up and down pavements.

I was given mine about four years ago and still can't manage that. I checked YouTube, half of them tell me to lean forward going up a kerbs, the other half tell me to lean back.

Its just something to consider.

Also, what's happening with managing your pain levels now?

JDQuinn75
JDQuinn75
in reply to kohai

Kohai no apologies needed. That’s okay. I saw there reply on my feed. Back to the topic of a wheelchair for myself. First of all I’m in the states not uk. Second the days my spine really hurts in the thoracic area is the day I feel I really had a wheelchair for me to use on those days. One that’s light weight and I can pop off the back wheels when putting the chair in my car. I’m not the type to complain when I feel bad but when I hurt like I do at times it just hurts to bad to try to walk. Those are the days I’m in need of a wheelchair. I don’t care if other well say or think that I don’t need it. I’m the only one that knows if I do or not. I’m not ashamed to be using one either. It’ll keep me more comfortable on those days and help me get around better and keep me from falling too. Especially with the OA in my right hip as well. Talk back with you soon Julie.

JDQuinn75
JDQuinn75
in reply to JDQuinn75

Kohai, I just wanted to update you about how the pain tolerance has been for me this week. It’s been tolerable but still very noticeable in my spine. My feet this week have been an issue though for me this week. I know it sounds like I’m a mess do to the pain in my spine , right hip and plus both of my feet too. Came home from work this afternoon and changed out of my clothes and into my pjs. My whole body feels tired this afternoon so my pjs look like the right thing to put on . I’m resting my feet right now and letting them be without socks or any type of shoe right now. Hope you haven’t had to much pain in the last few day since talking to you last . Have a good evening. And talk back with you soon . Jason

JDQuinn75
JDQuinn75
in reply to JDQuinn75

Good afternoon Kohai, well Julie we’ve had rain move in this afternoon and is expected to last through tomorrow. I’m already feeling the pain more in my spine do to the rain moving in . It’s definitely a trigger when rain moves in to make my pain worse than what it was before the rain. So I decided to get my pjs back on for the duration of the day and probably stretch out in my bed for awhile while it’s raining. I could use a good power nap maybe for an hour at least. Talk with ya later.

kohai
kohai
in reply to JDQuinn75

Hi Jason,

Firstly I want too...

(say is many things first)..

but, top of the list is in letting you know I hadn't abandoned you due to my lack of replies.

Like you, I have rough periods too, where all we want is to get into our pj's and find a comfortable position where everything hurts the least, and either just stay there trying to relax, or have a nap.

I saw what's called a 'Pain Management Team' last week.

< They are a team of occupational therapists, physiotherapists, surgeons, dietitians (who counsel on diet and exercise -I think), and a few other specialists, all who are trained just in dealing with managing pain.>

Too so many, including myself, this sounded like exactly what I needed, however, there is a large red warning flag here that is well hidden until you speak with them on your first appointment.

While I wasn't 100% sure exactly who was on their team, what happened there etc.. Google was helpful in all of these areas, except Google didn't appear to know, or have anything posted (that I saw( that warned me of this Red Flag.

So I'm sat with this specialist and getting gist that before anything can really be done, patients are asked to attend this course. Its over 12 weeks (3 hours in one day - just once a week).

Apparently they teach things like Mindfulness and relaxation, diets (if needed), exercise, positions that they like patients to get into, when we're in pain and would normally reach for the pain relief pills or muscle relaxant pills. The positions (techniques) are, they hope, a replacement for the meds they feel we're reliant on.

Now heres the Red Flag I didn't see coming, and am certainly not happy about, its making extremely anxious -

The specialist said that between the time I was there with her then, and when the course starts (September), she'd like me off "all" medication!

Its not repeatable exactly what went through my head when I sat at home later that day thinking over everything that had been said. But they try to cram so much information in within the allotted appointment time that they don't really give the patient any time to take in and digest what's being said. Its only later when thinking back over it all that the "red flag" of having to stop all meds, and the amount of pain that's going to leave me in, that it really hits home!

So I've been trying to safely come off the meds, but my pain tolerance level has been exceeded and as I'm sure you're aware on the most painful days, what that's like.

This (above) explains now why I haven't been able to reply to you, even though I felt guilty in thinking and feeling you may have thought I'd abandoned you for no apparent reason.

Now has been the first relatively pain free break I've had where I could get back to you and explain what was going on.

(sorry for the typos, I'm trying to speed type on my phone keypad incase the pain returns and my phone doesn't have a spell check on it - and I haven't reread back over what I wrote, so I hope it all made sense.)

JDQuinn75
JDQuinn75
in reply to kohai

Please there no need to apologize to me. We’ve had rain here since Friday night and let me tell ya when the dampness sets in I really feel it in my spin and hip as well. Had a few rough days myself last week. Those days I wanted to do nothing but sit. That’s what this pain does to me it keeps me sitting on my back side when I have things to do. I guess that’s also where a wheelchair would come in handy for me when I have those days. It seems that I have them a lot anymore tho. It makes your whole entire body feel tired too. One of the days over the weekend I ended up putting my pjs on for the rest of the day and went to bed and fell asleep for about 21/2 hrs. It was almost 6 in the evening when I woke up. I’m curious on how the summer here will be for me this year. Last year was just as bad as last winter was for me. I’m wondering if I should get a massage from time to time or if it would even help it I did .

kohai
kohai
in reply to JDQuinn75

Nooooooo DON'T get a massage whatever you do !!! Not until you have a proper, qualified result on whats going on with your spine. A chiropractor knows where to manipulate on the spine, as does a physiotherapist, but a masseuse may/could end up causing you more harm than good, especially as you don't know what's wrong with your spine yet.

When I was told I had shoulder impingement in both shoulders, there are things I could have tried, but for my own peace of mind, I chose (thankfully) not too, because it wasn't until I'd gone in for what was supposed to be a morning 30-60 minute quick surgery to shave back the bones in my shoulder, that the surgeon saw that where my shoulder had been left for so long untreated, (malpractice and negligence by the initial surgeon I was with, until he retired) .. the new surgeon who operated on me found that my entire chest bicep was literally hanging on by a couple of fibres and could have snapped at any time, leaving me with a completely unuseable whole arm. Apparently every surgeon in the hospital had scrubbed up to come in and see my shoulder because the only time they ever get a torn bicep, its a straight tear and usually from soccer players .. they'd never seen one, and likely never would again see one where the bone chips from my shoulder had travelled down from the ball and socket area, down the left side, and into my chest bicep area where the bone chips started ripping and shredding the fibres, muscles etc that held my chest bicep together.

I was in surgery, in total, over 5 hours. ( so much for my quick 30 minute surgery). My husband was frantic, phoning the hospital every 30 minutes to see if I was back on the ward yet, he knew it should have only lasted 30-60 minutes, so after 2 hours passed, he was out of his mind worrying, not knowing what was going on.

And yet all that time prior to surgery, I could have done anything my shoulder pain allowed, and been completely oblivious to the real severity of what exactly was going on in my shoulder.

So please, wait until you've got your diagnosis, ask the specialist you see or rheumatologist if having a massage is a good idea and if it would help. Chances are, you may have acupressure recommended (not done by a masseuse).

Acupressure as far as I'm aware is deep tissue massage done by a physiotherapist. You'd benefit more from that than from putting your health at risk getting a massage.

As for a wheelchair, yes I'd definitely recommend you getting one, but do your research on them first because the more you want from your chair, the more expensive they can be. Also make sure to get your inside leg measurements and height checked so you do get the right sided wheelchair for you otherwise you may end up feeling like you're sat with your knees under your chin. Some have been given wheelchairs and weren't measured for them, and they could fit their shopping carriers between them and the arms of their wheelchair there was that much space. So make sure to do your research before spending a lot of money on something that ends up completely unsuitable for you.

JDQuinn75
JDQuinn75
in reply to kohai

Okay that’s why I asked. Julie . I’ve done a lot of looking at wheelchairs online on different sites to get a general idea on what I’d would want or what available as well. I think the best way to go is titanium. Do to the fact that titanium in very light weight and the ride for the user is suppose to be a lot better than other wheelchairs made out of different material. Titanium wheelchairs seem to have better reviews as well. They’re higher in price but the why I see it’s is do it right the first time by getting the right wheelchair so it’ll last for years to come. No I probably won’t have to use it everyday but it’ll go with me everywhere I go just in case I feel I need the assistance with the wheelchair other than being on my feet and trying to push my way through the pain I’m having that day . Well gotta run and put my lunch together for today to take wo work with me this morning I’ll chat with you later. Have a good day Julie.

kohai
kohai
in reply to JDQuinn75

Hi Jason,

Just reading through your posts now, and reading your update on your pain tolerance levels, and how its been for you lately.

Believe me, there are so many of us who can relate to your sentence about "feeling a mess due to the pain" .. so many of us feel in in different ways.

* It can be something we say after describing to others the long list of different areas of pain we're in,

* It can be because we just haven't had the energy to maintain hygiene levels we normally would do on better days, or when we were healthy.

* It could be in describing all the things around the house we want to do but for one reason or anohter (bottom line - pain related), we just aren't about too..

I myself have used that exact same sentence to a social worker when describing how I haven't been able to get the laundry done or hung to dry, I haven't hoovered or cleaned the house, followed by the line " I know, I'm a bit of a mess" or "in a bit of a mess" ..

It really wouldn't surprise me if a poll were taken, and that came out as being one of the most used sentences pain sufferers have used on more than a few occassions, so please never feel you have to offer excuses, reasons, apologies or anything for what you're feeling or going through. I know that's easier said than done, as even know, I stll find myself apologising too, but we shouldn't need too, not too anyone!

We shouldn't feel we have to offer any form of apology or reason for something we didn't ask for and that is out of our control.

I think I remember telling someone a while ago while trying to laugh off and make light of my pain and situations;

" Its just my bodys' way of telling me 'Its Pay Back time' for the active life I've had up until now and all the hours I used to work each week" - think people who aren't in any pain can relate to that then, but the days I'm at my worst and I have appointments with people in different sectors of the health services where I really just 'not in the mood to humor them, I'll just say things like "Sorry for my mood, I'm having a bad pain day"

(ooh thats one you could use :) it makes people try to be a lot more patient, show a lot more empathy and try to get your appointment over with quicker for you - even if their 'I hope you feel better soon' grinds on us)

The above reply, on reading down what you've written, also partly covers your post where you said how the weather hasn't been great. Yeah, rainy days are awful for almost all OA sufferers :( Its one of those times where the weather gets right through to the bones and makes everything feel like it either hurts or aches.

All we can really do on those days is take it easy as much as we can or that our lifestyle permits (meaning its not as easy to relax for those who are still able to work, have to chase the kids around etc)

JDQuinn75
JDQuinn75
in reply to kohai

Julie I have three lavender wheat bags that I use on my shoulders and live used them on me feet too and other parts of me when a part of me hurts. I had someone on here a few years ago recommend them to me. Boy I’m glad I ordered them when I did. Even though they were not in the states like I am. Julie I know I’ve never told you this but I’m very rarely to be one to complain with anything even when I feel bad. I’ve been that way since I was a little fella. I do feel though the way my arthritis is acting that in going to need something to get around when I’m not home do to the fact that my arthritis isn’t getting any better. It’s only a matter of time that I start feeling it more in my neck and I’m dreading that day to be honest with ya. If my legs start getting weak from it then I’ll know this is trying to affect my mobility for getting around on foot. Only time will tell. Well I guess I better go for now it after 9:30 here now and I need to get my rest before I have to get up to get ready for work in the morning. Talk with ya later Julie.

kohai
kohai
in reply to JDQuinn75

Jason,

Last post I wanted to cover was where you've mentioned these three things;

* "My feet this week have been an issue".

* "pain in my right hip and plus both of my feet too".

* "I’m resting my feet right now and letting them be without socks or any type of shoe right now."

- Yo u've also previously mentioned (not quoting here) how slack your doctor is toward what you're going through.

I have some questions for you in this post;

1. Have you seen your doctor since you first posted on here asking about whether to push your doctor to do something or whether to see a rheumatologist ?

2. Have you tried researching online to see if there are any places in your State that do provide either cheap or free mobility aids (such as wheelchairs) to those with health issues?

3. When you've seen your doctor so far, have you asked about being referred to see a rheumatologist about your spine or a podiatrist about your feet?

(while both can be covered by health insurance, if you go private, they can get quite costly with each visit being quite short)

4. How long exactly have you been suffering with the feet and thoracic pain? and been reporting it to your doctor?

Something now that you can start doing, but remember, your doctor may not have time to read reems of paperwork or notes, so keep these clear and concise.

Get yourself a small booklet type journal. Log the time the pain starts, where the pain is, what type of pain it is ? (sharp, stabbing, dull, achy, short lasting, short lasting but keeps coming back within a certain time frame, happens more after doing certain things, like bending, walking up and down stairs, reaching up, lifting items over a certain weight) - where and what hurts when you do each of the prior?

What type of pain relief have you tried and over what time frame ? a few days? a few weeks?

When the pain comes, how long does it last and what is it preventing you from doing ? (is it affecting your work in any way? concentration? sleep? etc)

My husband used to set up a webcam on me during the night so it would run to when he turned it off in the mornings. He did this for so long, that I'd forget it was running - Its strange that when we know we're being video'd in pain, or doing certain things, unless its intentional, we feel like we're play acting, like we're faking it for the camera so to speak.

But as the webcam had been on for so long, I just forgot about it.

About 5 years ago I found I couldn't lay flat or even close to flat at all. If I did, I literally wasn't able to move anything other than my head and arms come the morning. I couldn't even lift my back an inch to get my hand under my back, thats how much pain it caused, and because we had my side of the bed pushed against the wall ( I went through a phase of falling out of bed), I had to try and slide my entire body across both my side of the bed and my husbands. It seriously took me hours of screaming and tears. Every movement was sheer agony that in the end, I was sleeping downstairs on the sofa propped uproght with a load of pillows every night.

Then the OA in my knees went so rapidly downhill that I couldn't get off the sofa!

There wasn't even anything near me stable enough that I could grab hold of to pull myself up - aside from that, having two injured shoulders, tennis elbow in both arms, weak wrists and arthritic hands, it really was even harder for me to get off the sofa.

Me completely forgetting the camera was even on, I certainly wasn't play acting - My husband got thte footage from the webcam and transferred it to an iPad and we took it down and showed my doctor exactly what I was going through every time I tried getting off the sofa, even if it was middle of the night to use the bathroom.

It also meant if I wanted to get up during the day, then I could only sit on wooden kitchen dining chairs, because I knew if I sat on the sofa, I wouldn't be able to get back up again, not without all the screaming, tears and pain again every time.

My doctor was mortified seeing this (apart from complaining there was no sound !! I mean c'mon, did he really need to hear my screams? or the words that came out of my mouth? )

The video however worked wonders! Within 48 hours I had an occupational therapist come to my house. Initially she was supposed to be looking at adding posts under each of the feet of the sofa, so as to raise it up, making it easier for me to stand, but she was appallled I even had to sleep on the sofa in the first place and arranged for a hospital bed to be delivered the following day, which I've been in ever since.

The down side is that I never imagined, ever, that just four years after marrying my husband, we'd be forever sleeping apart. We could get one of those beds where one half of it moves like my hospital bed does, but we'd have to pay for the cost of the bed, the maintenance of it after the first year and the cost of replacing the mattresses would also be down to us.

The only up side is, that my screams in pain during the night don;t keep him awake now, and his excessively loud snoring doesn't wake me.

But thats just my example of what happened when I showed my doctor proof of the pain I was in, how much, how often and that I wasn;t faking the pain.

Its a really sad fact that some use pain as an excuse to get either a day or more off work, or for the pain medication .... which then makes those of us who really are in pain struggle even more trying to prove to our doctors that we're telling the truth.

This is why I mentioned logging the details. Its awful that we even have to prove we're in pain, but if your doctor is reluctant to actually do anything about the pain you're in, remind him that you've been reporting it now and suffering with it for over a month, that its not easing up at all, if anything, its getting rapidly worse - which going by the pain you're telling me about in recent posts, compared with your initial post, is infact happening.

Also, with regards your hip pain, this could either be whats called "referred pain" , or your OA has spread further down your spine.

But please do log where the pain started, when it started.. where was it when it started (and in comparison) also to where the pain is now, like its spread from the thoracic to thoracic and hip.

Also in regards the hip, (these aren't questions I'm asking, they're things for you to think about and log so your doctor knows, as they are questions where the answers will be helpful for him or a rheumatologist in their diagnosis) is it just the hip? does the pain radiate from the front of you to your hip? or from your lumbar to the hip?

These are suggestions, just ways I'm trying to think of that may help you in getting your doctor to get his lazy butt into gear and actually do something about the pain you're in and your decreasing quality of life.

JDQuinn75
JDQuinn75
in reply to kohai

Good morning Julie, I’ve had pine in my feet to the last five years or so. Not long after the OA started in my hands in 2013 . It was noticeable in my hip by 2015 but by 2015 I was feeling it in my spine. The lower part is where I was feeling it first. The lumbar area. By 2017 it had started in the thoracic area of my spin as well in the cervical spine area. . But it very noticeable in the thoracic area anymore. My neurologist when I see him in September is aware of my arthritis in my lower spine but not in the thoracic area. It’s gotten bad enough in my lumbar spine that I think it’s pinched my sciatica nerve. The reason I say that is that I get a warm sensation that goes down my right leg. Some days I feel in more than others. Of course my neurologist is aware of that as well. The warm sensation feeling I’ve had I’d say at least the last three years. I saw my gp in March for my six month appointment and I mentioned the discomfort I keep having but nothing was done about it. He pretty much shrugged it off. At this point I’m going to do what I think is best for myself. I haven’t seen a rheumatologist since 2015 when I was diagnosed with the OA. If I feel like a wheelchair will help me out considerably then I’m going to Per-sue the wheelchair. Right now I think that’s the only thing that will help me with all the discomfort I have anymore.

JDQuinn75
JDQuinn75
in reply to kohai

Kohai, I feel it in my right hip everyday and all day. It doesn't seem to want to let up. Frankly I'm tired trying to get a doctor of any kind to help me out here. Since yesterday I started shopping wheelchairs again online. I feel this probably the best way to go at this point. I've been fighting this for almost four years now , and as the years go by the pain feels like it's getting worse. Julie I'm only comfortable sitting down anymore , this is why I say that a wheelchair is probably my best solution. This way hopefully by being off my feet and getting around in a wheelchair hopefully I'll have some comfort but feel less pain than I am now. I find the longer I'm on my feet the more intense the pain gets in my spine. This is where I stand right now with this.

When I was 23 I was told I had osteo in pretty well all my joints described as the joints of a 55 yr old with arthritis. And yet I was only 23.

My spine was never mentioned. Now aged 66,a couple of years ago I saw a chiropractor and she did some amazing work, however what I learnt was how bad my back was.

I have done bikram yoga most days ever since. It took me four months before I could kneel, and now at two and a half years my lower spine is beginning to think about flexibility.

I am convinced now that anyone with arthritis etc has it in the spine. After all the spine is fundamental to good health on so many fronts.

Whether that's of interest or relevance I don't know, but that's my story and take on this.

It’s sound like osteoarthritis hit you sooner than it did me. I was 37 when it started on me. Now getting ready to turn 44 in a few months and it’s started in several areas of my body. It’s in my hands, feet, knees , shoulders and spine now. It’s all down my spine now from the cervical to The lumbar area. The pain doesn’t stop in my back. Doctors won’t do anything for mine so I’ve decided to be my own doctor and do what I think will help me . Including getting mobility aids I might need to get around. You’ve probably read some of my feed talking about possibly getting a wheelchair for myself to help me get around. I have days at times that it’s hard to get around at times.

Good evening Kohai, well I seem to be having one of my off days today. Spine hurts like the devil and my whole body feels tired this evening. Do what did I do when I got home? I immediately put my pjs on I’m feeling it quite a bit in the middle of my spine this evening. Making me very uncomfortable. I’m guessing I’ll probably have a restless night tonight when I’m trying to sleep. Usually when I feel this way I at time will have a restless night as well. I hope that won’t be the case tonight. Julie I know you asked in one of your last post to me if I’ve had any xrays on my spine lately. My neck was X-ray about a year ago and I guess it was two years ago that my lower spine was x-rayed to check the sciatica and what was causing the warm sensation going done my leg. But since the no other X-ray has been done on my back. I’ve only been seen by a rheumatologist twice and that was about 4 years ago. At the time my spine wasn’t bothering me like it is now. I may lay down early this evening not sure yet but if I feel like I need to I will. Early for me is around 8 or 830. We’ll let me go so I can stretch out awhile and hopefully the middle of my spine won’t be to bad. That’s wishful thinking but hopefully it will. Jason

Ugh, I just had my entire reply written out and somehow accidentally closed the page losing the whole lot :(

I saw the Pain MAnagement specialist 7th May who decided she wanted me off all medication by September and since that appointment when my meds started to drop, my pain level in every joint and through my entire spine went way above my pain tolerance level. I've already been into A&E since that appointment. The spasms got so intense in my cervical area and across my shoulders, I couldn't move my head in any direction. The doctor there gently pressed the top of my spine and I felt like I almost shot through the roof (or floor) with the pain. Hence why no replies from me.

Whilst being in pain, I was thinking of things you'd said.

So you know, there is a huge difference between;

1. Stating Facts

and

2. Complaining

You are doing point 1.

I've been moderating various types of forums since the turn of 2003, so roughly 16 years now, and my last job, I managed the support fir the whole online website (elsewhere) fir roughly 24'000 members. Over 8 years, I ended up doubt about 25 different jobs on the site, which I still continued to do even after becoming part of the site management (along side the site owner and its initial programmer). I covered everything on UK time while the other two covered the US time zones.

So I think it's pretty safe to say I've helped, worked with, friended and been a shoulder to lean or cry on for way over 75'000 people by the time I left because of the pain becoming too much to handle, and I was working 365 days a year, every vacation I was on (my laptops even had their own luggage 😁 ) So I can spot someone fake, someone trying to test me or my knowledge/experience, or generally complaining because they can, (or they want attention, or a deeper rooted issue)

regardless of why some do complain though, that's not the point and I'm side-tracking a bit,

there is something I would like you to try and do for me, and for yourself.

Whenever you see a specialist or a doctor, or even come on here, I'd like you to try this;

"Every time you get that feeling that you're complaining, worried about being seen as a complainer, or ever feel like you have to justify why you're talking about the pain you're in, keep reminding yourself that "I'm not complaining, I'm stating facts".

Fact; You're in pain in various areas

Fact; You're having trouble getting your doctor to listen or do anything.

Fact; Just because you're last test result was only a year or two ago, it doesn't automatically mean it hasn't spread to other areas

Fact; A wheelchair will be beneficial to your quality of life

Fact; Without a wheelchair, and the longer you go without one, the more your quality of life will decline (going by the facts you have stated in previous posts.

Jason, I know you said you're not one to complain, but as you mentioned that twice, its obviously something that either worries, bothers or concerns you when posting about your pain. That's why I felt it needed addressing.

No-one here is here to complain, we're all pretty much in the same boat (to coin a phrase) with us all being in pain caused by one or more health problems.

You weren't complaining when answering my questions, you were stating facts as fully and concisely as you could, which is actually really good, because the way you've stated things to me on here is exactly what your doctor or specialists need to hear too.

Remember one other thing, sadly, all too often, we're the ones left being responsible for getting the aids that help give us that better quality of life.

As an example, go onto Ebay and type in the search box the words Mobility Aids.

I ended up having to my a tool box just to fit all of the various ankle, knee, lumbar, hand, wrist, forearm, shoulder braces and supports I have, then I have the orthopedic pillows for the times my neck hurts and beds the support, I have a riser/recliner chair (but stupidly checked the wrong box, so ended up with one that vibrates so much my eyeballs shake - I don't use that feature - it has warming patches on the lumbar and thoracic areas, and reclines.. though I'd still prefer the riser/recliner I have to live with my mistake). I have walking aids, grab rails around the bathroom and house to name just a few things I've had to get myself because the waiting lists to see a specialist who can get me this all for free, while would be nice, is a very long 8-18 month wait.

And like you know, I was feeling that very same way.

Its hard to really describe, but I can empathise and relate Jason.

Its almost like, on the one hand you don't want people to see you in a chair and think you're over-reacting or faking, or we use the chair on a bad day and a stick or no aid on a good day, who is judging us, because we feel someone will, even if they don't say anything. Then theres the other side of this where we question our own validity about 'do I really need one?'.

If any of this sounds familiar, you're certainly not alone! I went through all of these questions and a whole bunch more for months before finally getting a wheelchair. I'm really glad I did though. While I have met a lot of obstacles, in a way, its brought out a creative side of me I didn't know existed. I find the strangest ways to get around obstacles in my wheelchair now, of course I still have to ask for help with things I can't manage, like some doors, but I generally find if I make light of it when asking for help, people are more than willing to help.

You may also need to look more closely at where you work. Doors, ramps, toilet space for a wheelchair, accessibility, that is, if you're planning on using it at work.

I hope some of what I've said does help. And I will try to answer more regularly, please don't ever think I've just disappeared. If I'm not here, guaranteed its just because of the level of pain I'm in.

JDQuinn75
JDQuinn75
in reply to kohai

Good morning Kohai (Julie) , I know not only how much I’d benefit from a wheelchair but how comfortable is probably will be as well. My Maine areas that are very bothersome for me anymore are my spine and hip. The way I feel anymore is making me lean more towards on getting fitted for the wheelchair. As much as I’d like to be able to use this wheelchair at my work I’m not going to be able to. I don’t go to my neurologist for another 3 months and yes that feels like a long time from now but I’ll know it’ll be here before I now it. Having looked online at various different wheelchairs I’ve decided on the brand that I want for myself. TiLite is what I want to go with for myself. They have a couple of models I’ve looked at on there website and both are the lightest that they build. One is the TiLite TR the other is the TiLite ZR . They are both made out of titanium material. With them made made out of titanium it means less vibration and a smoother ride as well. TiLite chairs are very stylish and I can have it built to my personality so it looks like me. If you know what I mean. There a various different ways I can have it built. Meaning I can have a tattoo put on it or painted in my favorite color. I’m going to email my neurologist office and tell them that I’m considering the wheelchair for myself do to the pain I having all down my spine plus my hip as well. I know he’s probably going to tell me that he wants me to go through physical therapy before going the route of getting fitted for a wheelchair but I’m going to decline that and say I’d rather just go on and get fitted for the wheelchair. I can probably use this around home as well on my bad days for instance like when I get my laundry to get that washed and dried. I’ll put the basket in my lap if I’m in my chair that day. I find on some days after getting home from work that both my spine , hip and feet as well just hurts bad enough that I have no choice but to sit down for awhile do to the pain. Julie you’re one of the few on here that’s actually understood what I go through every single day. Also out of a hand full of people after telling them you’re one of the few that’s said I need to go the route of going on and getting fitted for a wheelchair. I’ve been through an awful lot in my life without having to go through this as well. I went through being operated on as an infant do to what I was born with , then was operated on again when I was about 6 or 7 years old for the same thing. I never thought I’d have to consider a wheelchair for myself do to the osteoarthritis I have now but I knew it was a possibility that I might once my osteoarthritis had advanced on me like it has now . Especially with it all down my spine now. I can still propel a wheelchair on my own so I’m not going to need to consider an electric wheelchair a manual wheelchair is all I need to help me get around with less pain. Today will probably be a bad day for me do to the fact that it’s raining here . So I’ll most likely be staying in my pjs today. With it rain like it is I usually do when I’m home. I stay more comfortable that way. Oh by the way I price out a wheelchair the other day for me and it came out to a price of about $ 7,600 . It was one of the models I mentioned earlier in this message.

JDQuinn75
JDQuinn75
in reply to kohai

Kohai, Julie I have to admit today is one of those days I’m wishing I had me a wheelchair to get around in. My spine hurts like hell today. All down my back right now. If I had me a lamp that a genie would come out of right now when I rubbed it my first with would be a wheelchair I could get around in. This is also making me feel exhausted today as well. And it’s not even 7 pm here yet. I’m tired of having to push myself through this every day. Day in and day out. If it gets bad enough when I’m standing at time it’ll put me in tears it hurts so bad in the middle of my spine. It got bad the other day as well. It’s time I know to go on and get fitted for the wheelchair. This has gone on to long. The pain seems to be getting worse other than better. I don’t know if I can wait til September to tell my doctor I need to be fitted for a wheelchair. But for now I’m doing what I can.

Kohai, Julie I’ve actually done a few measurements on myself today to see actually what I’d need to be a good fit for me in a wheelchair. Measurements from the bottom of my foot to the back of where my knee is to give me a general idea what I’d need. Also did on by putting my feet together to see the width or the foot rest. Across my lap is around 14 inches across with me feet together it’s right at 8 inches . From my heal to the back where my knees is that’s 18 inches . From my chest area it’s around 12 inches across. Now I’ve done the measurements with my feet without having shoes on. The shoe I ware most of the time when I’m not working on my moccasin slippers. Do to the fact they are the most comfortable on my feet. Even in the summer I’ll be waring them most of the time. Occasionally I’ll be barefoot in the summer on very hot day but most of the time I have my ugg moccasins on. The thought of having to go into a wheelchair do to my arthritis in my spine isn’t really settling with me very well right now. This has always been my biggest fear after it started in my spine a few years ago. Loosing the freedom of being mobile with the assistance of needing the wheelchair to help me as well. I’m sure you understand where I’m coming from with this. I’m not even 45 and having to go into a wheelchair scares me some.

Aww Jason :( I really do feel for you and empathise, I've lived through what you're experiencing now.

(Pre warning; this is a long post, but there is a reason for it)

I read your posts and, at times, wished I lived closer so I could help you through this more difficult phase, because having been there myself, you and I sound much alike in our thinking toward this, and the dislike for the partial loss of our independence. This feeling doesn't last forever - the emotional struggle of knowing we 'need' a wheelchair, but not 'wanting' one.

Of knowing we 'need' it, but not 'wanting' to accept. that, or our partial loss of mobility and independence.

You'll certainly learn the difference between' need' and 'want' though.

We've touched on measurements for your wheelchair, there is one you didn't mention.

* foot to back of knee (as you've done)

* lap width (as you've done).

* back of knee to where the buttock curves up to your back (for seat length) I don't recall you saying if you'd done this one too.

I prefer a longer seat cushion, even though I'm short (height wise), I like to feel that support under my knees, moreso as without the foot rests I have, that came with the wheelchair, my feet don't even get close to touching the floor, regardless of whether I use the seat cushion that came with it, or a slightly longer one. (mine was supplied to me via a company who have a contract with the hospitals, so after the occupational therapist put in a request for one for me, they just delivered it... all free).

I will point out two things here that you may find later, after getting your wheelchair -

1. It can be harder to use, navigate and manoeuvre a wheelchair at times if no-one has ever shown you how to do it properly. ( not impossible, just harder)

2. Don't take the word of YouTube channels

(example; I can't get up onto the sidewalk from the road/street, no-one has ever shown me how. So I looked on YouTube, one guy said to lean forward, which he managed to do in his video, another guy said to lean back, which he managed, but my wheelchair just tipped my chair backwards!). So it may be worth looking into that, I don't know what's available to you over there.

I will try to reply when I can, if you post, but as you'll see from my next message, my responses are quite likely going to be really short, like, a few lines. I'm struggling a lot lately.

JDQuinn75
JDQuinn75
in reply to kohai

Julie, the reason you didn't see that measurement was because I could get that one myself. I know I will have other times wishing that I had a wheelchair for myself to use. . That wasn’t the first time that I had felt that way. I’m not real tall or heavy set . I’m under 6 foot. I’m about 5 foot 8 to 5 9 do to lose of height do to the arthritis in my spine now. Of course I have a few extra pounds on me that I probably need to get off of me but that’s easier said than done. Everyone is different when it comes to what ever form of arthritis they are dealing with and fighting. When it comes to The spinal area in me I feel that’s probably the worst when it comes to pain levels. Especially in the thoracic area of my spine. I only did the few measurements to get a general idea what I would need for when I went to get my wheelchair. You had mentioned wheelchair you tub videos . I have found that some can be misleading in a way but others are really helpful. There one person that has done wheelchair videos on there that I found very helpful. He name is Mary Allison. She actually has some videos on YouTube that I’ve found very helpful. I started watching a few of her when I started thinking about getting a wheelchair for myself.

By the way, when I write longer posts, its usually to give you things to think about, because at the time of writing the post, I've had to write it out on NotePad first (on my phone) little bits at a time.

For the past few weeks/month either my body has adapted to the level of medication I'm on, thus now feels like it isn't working in managing the pain so well,

or my pain levels have increased.

The last couple of days for example, my knee joints have been hurting a lot more and my knees keep giving way under me, meaning either one or both (depending on which gives way) is then completely unable to weight bear. Sometimes it'll last a few hours, other times it lasts all day.

My spine has also been getting much more painful, more frequently.

When my spine hurts, I lay on my bed, on my side (whichever side hurts the least) and I'll try to gently rock my hip and the base of my spine back and forth to try and ease the pain. Some times it works, other times its just too inflamed and it feels like nothing I do helps (even heat pads or my TENS machines).

Then I found that this evening (Tuesday), after laying on my side for a while, it hurt like crazy to actually sit up.

(I try to take the pressure off a little by clenching my fists a holding my body weight up just slightly so my upper body weight isn't on my spine as I sit, but I was advised not do this because I apparently have weak wrists and risk snapping both wrists if they flip forward or backward whilst I'm trying to lower myself into a "sitting upright" position.

It just means, if I'm holding myself up slightly, I can quickly stop trying to sit and can get back to laying on my side' position easier and quicker.

I was looking at getting one of those machines that has a belt go around the waist, and either myself or carer then uses the hand held panel of buttons to lower myself down, and then back up if needed. But apart from being expensive (especially if it doesn't help), these machines have changed and been updated since the last time I used one on a patient.

Quick side note here, I had a nursing career for 18 years before changing career paths).

Also, because I have arthritis and shoulder impingement in both shoulders, I can't even prop myself up on my elbow(s). If I try, the shoulder pain is so intense after just a few minutes that I have to use my other hand to slide my arm forward, then down. It is incredibly painful, but I haven't found an easier way to get off my elbow yet.

So, needless to say I'm having a bit of a hard time with my joints, spine and pain levels lately.

I didn't mention it sooner as we're supposed to be focusing on you, not me. I felt I should at least explain my random long absences between replies though.

I tried writing several posts in one go in case I'm not able to get online for a few days, possibly longer.

I'm seeing my doctor this coming Thursday (I had to wait 6 weeks just for this one 10 minute appointment !)

If he gives me muscle relaxants, while they do work well for me, they do tend to knock me out.

If he doesn't do anything, then I'm going to be in too much pain and won't be able to get into a comfortable position or sit up so I can type a response to anything else you may post on this thread. I guess it depends what happens when I see the doctor.

Take it easy Jason, and don't over-do anything. Like me, over time, you'll learn more about what triggers the pain you get in certain areas, and either avoiding those triggers, or finding ways of still being able to do something, but in such a way that it doesn't cause pain. Sadly some things are trial and error, but due to the level of pain errors cause, we don't tend to forget them.

JDQuinn75
JDQuinn75
in reply to kohai

Julie, you ask what the measurement is from the back of my buttocks to the back of my knee that is 16 inches. I know you’re in worse pain that I am by the sound of things. But today been uncomfortable on both side of my hips. I’ve had a very uncomfortable feeling all day. And standing on a tile floor for eight hours doesn’t help things. As far as the back rest goes for the wheelchair I don’t I need it to far up my back but then again I don’t know . I think I can get away with 12 to 14 inches. I’ve got some discomfort in my back as well tonight and having a hard time getting comfortable. I’m thinking it might be a good idea to go lay down in my bed to see if I can get more comfortable. IDK. It’s a guessing game for me on how I’m going to be during the day. When mine starts getting bad I start to ask myself is it now time for me to go on and get fitted for a wheelchair. My biggest fear has been this all along that one day I’d have to do this. I haven’t mentioned that my hands hurt enough at times that I have dropped things. My hands feel weak at times when it get bad in my hands. I have found that therapy putty help a lot for me especially after warming it in the microwave for about 1 1/2 to 2 minutes. It works wonders for me. No otc drugs will even touch the pain I have. I’ve tried everything from moltrin to Aleve and other as well. Nothing eases mine at all. Drs have had me on five different medicines to try and they haven’t helped either. So if meds won’t help mine what will I ask myself. So when the meds didn’t help that’s when I started thinking about the wheelchair instead.

JDQuinn75
JDQuinn75
in reply to kohai

Good morning Ms Julie, It’s just me JASON. I hope your doctors did do something for you the other day. I was thinking the other day after reading your last post to me , do to all the pain that you go through. Would something like a hot jet hot tub do you and good? I’m just wondering if it would or not. We had rain here a few days and boy was I really feeling in in my spine area. When it rains here the pain seem to get intense in my spinal area all down my spine. I’m going to try and take easy today and tomorrow if at all possible. It’s supposed to be hot here tomorrow in the 90s . But I’ve also found for me especially last summer if it was to hot it wouldn’t set the pain off for me in my most painful areas of my body. For instance hip area and the spine area. I wish I could figure out away to send you a pic of the particular wheelchair that I’m looking at for me for my usage. It’s by TiLite and it’s titanium as well. It only weighs about 9.5 lbs. So it won’t be to heavy for me to load into my car after taking the back wheels off of it. Well it’s after 10 here now so I guess I’m going to go for now and go get myself freshen up for the day . Take care Julie. Hope you have a good weekend.

Hi Jason,

Yes, with osteoarthritis the weather can, at times, be our worst enemy. Many even know when rain is close as their bones start to ache. This increases the closer the rain gets. As each person is different, along with their level of arthritis, we all take different time frames to recover from this, and for quite a few (not all), heat can help.

You said you've been on 5 different medications, and forgive me if this comes across as rude or I've misinterpreted, but you come across to me, in how I read it, as quite a defeatist in thinking that because those 5 didn't help you, that nothing will.

I've, thus far, in just 8 years, been on just 25 different types of medication to manage pain. But as my conditions change, the pain levels alter, so does the medication.

Every thing patients and long term pain sufferers go through is a tremendous struggle, emotionally, physically and mentally and that alone can often take its toll...

One thing you should prepare yourself mentally for, and for your own sake, do not be talked into believing or accepting something if it isn't true! During the lasting effects of pain, so many doctors will often try to convince us "we're depressed".

That's NOT always the case, the doctor has to know, if this is said/discussed/mentioned at all, that you're not depressed, just extremely frustrated, with the pain, with it not being managed to the point you can have a decent quality of life, its frustrating feeling that more could be done that isn't or hasn't been. That frustration shouldn't be confused with depression. Enough on that.

A build up of medication to a point where you feel you finally have some quality of life and that its managing your pain level can take some time - by that, I mean, some, depending on how quickly your doctor increases the dosage, can take over a year before you'd be looking at being on 100mg twice a day of pain relief. The down side to this is all the pain you're in now, and more, will be felt as you gradually come off those pills, if you're being changed over to something else.

I would advise though, when your doctor does get off his lazy, reluctant butt and helps you, don't just take his word, or that of the safety and precautions leaflet that should come with them in the box, do your own research. Find out from various different sites online what they do, what the side effects are etc....

But please don't give up hope that after just 5 different types, there aren't any more to try, or there aren't any others he can give you.

With 100 different types of arthritis, and scores of labs working constantly on new arthritic medicines believe me when I say, there are a huge, huge amount more than just 5 that you've yet to even come across.

As an example, codeine is a starter medication or Tramadol. (some are highly addictive, so do your own homework and research your medications and diagnosis).

Opiates, opiate abuse and addiction isn't a path I'm going down, its its own Pandora's box.

(My apologies for typing errors. I use my phone a lot when replying and the 'reply box I get on my phone is tiny, so I don't always see the errors that I make, while trying to speed type, or those my Android dictionary sees fit to change. My level of grammar is above average, but its easier replying by phone.)

JDQuinn75
JDQuinn75
in reply to kohai

Julie, I’ve always thought that I might have a second type of arthritis other than the osteoarthritis I was diagnosed with in June of 2015 . Rheumatoid arthitis was immediately rule out when I saw the Rheumatologist. That day when I first saw him he pulled on my shoulder joint so hard I could of know the SH*! out of him. It hurt like hell that day both shoulders did . Naproxen he put me on at the time but it didn’t help enough to help me. Of course xrays were done on my hips and shoulda at the time. The didn’t X-ray the spine . 2016 is when I started feeling it in my spine. The lumbar area first before it started in the middle where I feel it everyday day now. Now just recently started feeling it in the cervical area too. Two years ago in was confined that there were minor signs of definitive there before I started feeling it. It seems the only doctor that listens to me about this is my neurologist that I see for my epilepsy. He’s the one that order the xrays on my lower spine two years ago. After telling him I was having sciatica problems down my right leg with an intense burning sensation. And still do to this day. That X-ray confirm degenerative in the lumbar area of my spine. That why I have the pain I do now. The way I see it now is how bad is the degenerative going to be by the time I’m 50? That’s six years from now. I’m sure by that it’ll probably be more advanced. Especially in the spinal areas.

Jason, good morning/afternoon,

Going over your posts, which now cover 2-3 months, it's time to make that decision on whether you get a wheelchair or not, because, well, putting it bluntly, talking about getting a wheelchair won't help you nearly as much as actually getting one.

I do know how difficult it is to make that final decision and actually get one, but you'll be a lot better off once you get one and start using it. It took me roughly a year of going back and forth between saying I was getting one, telling myself I didn't actually need one yet, and having all the pros and cons in between. It was a huge relief on my joints once I had got one though. So you really do need to make that choice, and not leave it as long as I did.

Your doctor - can give you pain medication to manage in the interim while you wait to see a rheumatologists (but you must be 100% honest with him, and let him know what hurts, where, when its worse .. he's not a mind reader so you need to help him understand what you're going through)

The rheumatologist- can give you a diagnosis on what you have, and where.

Take that information back to your doctor, as he'll be able to prescribe something(s) more suited to your condition(s).

Occupational therapists - can, if you want, visit your home and advise you on suitable adaptations to make life easier. Then back where he/she treats patients, may be able to give you it advise you on suitable splints (for when active, resting, sleeping), braces (material kind) for joints. It depends on what your diagnosis is, and where the pain is.

Physiotherapist - These can, and are fully trained to do deep tissue acupressure, which can be beneficial where you feel the most pain. There are numerous exercises ranging from very gentle, to a little more vigorous, depending on their evaluation of what you're able to do. It varies per patient.

Hydrotherapy - If its available in your area can also help. Its gentle exercise in a warm swimming pool.

Acupuncture - (by a doctor who trained in this area, not all do), or a specialist within the healthcare system. It may help, moreso if there is pain in one specific area, greater than most.

(I had this at 3 week intervals on the back of my neck/cervical spine. The first time, my doctor hit a nerve which left me in agony for hours after. But even though I persevered, it didn't help me, purely due to the disc damage and severity of it.)

While I'll be here for you to talk too, you do need to start being pro active and get the ball rolling your end.

You've already found a wheelchair you feel would suit your needs so why not get it?

I've given a short description on what the people above do, its your choice now who you see. But remember, doctors, physics, O.Ts etc are all better equipped and able to help you manage the constant pain you're in, if you have a diagnosis. (Believe me, so many struggle just to get that!).

Keep persevering though, and though now, from what you've said, its unlikely you'll ever be completely pain free, these people are there to help you to get, and maintain as much of a manageable pain as possible. (It should be like being able to say "It hurts, but not enough to stop me from doing what I'd normally do".) - most of us can only dream of being able to say that, but you still have time on your side to get the help you need, before it affects your career or any other part of your life, more than it has already. So choose who you need to see, make the appointment and get yourself a wheelchair.

JDQuinn75
JDQuinn75
in reply to kohai

Julie after reading your second post out of the two today that you’ve sent , I’m gonna be up front with you. Yes this is something that has been on my mind for a couple of years now. After having it starting in my lower spine I knew it was only a matter of time that I’d probably get to the point of needing a wheelchair. My general practitioner I go to hasn’t recommended me going to an occupational therapist or physical therapist. Again the only doctor that has was the same doctor that ordered the xrays two years ago. He wanted me to go to try and help my sciatica nerve from acting up but not for the degenerative and pain I have. I’ve not told my neurologist my spinal pain I have as of yet. Do to having other medical things going on at the time . There’s a couple of DME medical store not far from me that sell the wheelchairs I’ve look at. I know once I do this this will be my life for the rest of my life having to get around in a wheelchair. There’s mixed emotions I have about this and do think of pros and cons of being wheelchair bound as well. Believe me I’ve thought of it several times already. Yes spinal arthritis definitely hinders a person once it starts in the spine area. Another thing I think is what if this gets to the point my spinal cord is effected too. There all kinds of scenarios I’ve thought about since was diagnosed in 2015 .

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