Log in
Arthritis Action
4,663 members1,256 posts

Pain in the middle of the spine

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

26 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)

Reply

Good morning Kohai, I’ve been fighting this for the last three years if not four. Looks me 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

1 like
Reply

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).

,

Reply

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

Reply

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)

1 like
Reply

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.

Reply

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.

Reply

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?

Reply

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.

Reply

Oh wow that sounds awful.

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

1 like
Reply

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.

Reply

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?

Reply

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.

Reply

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

Reply

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.

Reply

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.)

Reply

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 .

Reply

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.

Reply

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.

Reply

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)

Reply

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.

Reply

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.

Reply

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.

Reply

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.

Reply

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.

Reply

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

Reply

You may also like...