In agony

[PrincessCupcake]

All I seem to do is take pain killers and days like today don't help at all. My hands are so so painful today I wish I could just chop them off.........😢

[kohai OA Ambassador]

Ugh I do know how this feels and have an idea of what you're going through.

For me, mornings were bad, I couldn't bend my fingers at all. It was like I'd slept with a tennis ball in each hand and my fingers were stuck like that when I woke up.It'd take me ages on each hand just to try to get them to bend or straighten, without it feeling like my finger bones were going to shoot out of the tips of my fingers!

Everything hands related hurt! I couldn't even hold a knife and/or fork,, let alone carry a plate.

Sound familiar?

Can you please post a little more detail?

Have you seen a specialist?

Got a diagnosis? Been referred to, or been seen by an O.T?

How long have you had it?

Has your doctor prescribed any medication or proposed a course of action?

Unfortunately, saying your hands hurt a huge amount in an OA group doesn't give us much to go on, or know how best to help, as we don't know what you've already tried, who you've seen about it etc.

Hopefully with a little more information, we'll know how best we can help and/or support you

On a plus side, though my arthritic hands were a complete nightmare in almost every thing I did, mine actually went into remission after two years.

They'd ache sure, but it was like having tired feet after a double shift type ache.

My hands stayed in remission for almost two decades! They're only agonising now because the idiot of a doctor I have keeps prescribing the wrong meds, or lowering my doses so low, every single joint, my hands and spine (all with OA) have become debilitating, I've had to restart using 'Voice to Text' software on my computer as I now can't type for very long. Its like reliving the nightmare of decades past.

Hopefully, knowing others have and do suffer the same thing lets you know you aren't alone.

kohai

[PrincessCupcake in reply to kohai]

Thank you Kohai for your reply. It all started just over a year ago when my knee became so painful and swollen, walking was a nightmare. I saw my GP who gave me anti-inflammatories and pain killers and sent me for an xray. The xray didn't show much but the pain was getting worse. I hadn't injuried my knee or anything. GP then sent me to orthopedic consultant, he had an MRI done and that came back with moderate OA and a small tare. My knee at this time was still painful and swelling had not gone down. The anti-inflammatories were not doing anything and i had been put onto pain relief - diyhydrocodine which took time for my body to get used to them, at first they took the edge off the pain. The consultant said there is nothing he could do as, I was to young - 56 then now 57, it wasn't bad enough and that there were people worse of than me. He said go back to GP for a referal for physio. I just broke down and begged him to do something, he offered me a steroid injection, which i accepted. Never have I felt so worthless. the injection didn't work so off I went back to my GP to be referred for physio. I started going for physio and had about 6 sessions when he offered me another injection. We discussed having the injection as the previous one had not worked. So I had another. this one didn't work either and I also had a terrible reaction to the injection. Throughout that time my hands and wrists had started to be painful, swollen and burning, I mentioned this to my GP who at that point didn't seem to bothered. I was still taking the dihydrocodine which she increased the dosage. I asked if it might be RA and had blood test done which came back negative, but she said you can sometimes get a negative result so I went to see a rheumatologist. By this time my hands were so painful and they had gone mis-shapen, my thumb joint in both hands has moved outwards - if that makes sense. The rheumatologist was great, he thoroughly examined my knee, hands - everywhere. He said he would forward his findings onto my GP. GP said he had diagnosed OA, fibromyalgia and a possibility of carpel tunnel. He has referred me to the hand clinic, pain clinic and I have nerve tests for carpel tunnel. I was so glad that I finally knew what was wrong with me. I have joined the GP referral group at the local gym, where they have put together exercises to suite me and they are so supportive. I go to the gym at least 3 times a week and depending on how I am I do as much as I can.

My hands at the moment are so painful, stiff, and swollen that I just don't know what to do with them. My knee is still painful, gives way and when I had my assessment for the GP referral at the gym they measured it and it is 7cm bigger than my other knee.

This week has been terrible, in 3 days i've had about 5 hours sleep. I'm 57 and feel as though this disease has taken over my life, I'm not able to drive or even butter a slice of bread and have had to become more reliant on my husband to help me with everyday things even fastening a button. I have been trying to hold down my job, which is getting more and more difficult. My husband has to take me to work and my colleagues help me into the office, as my knee is so painful when walking and feels as though it will give way.

I have also been suffering with clinical depression since 2013 and still take medication daily, as you can imagine my mood is getting to rock bottom. I have put 2 weeks holiday in to try and rest.......

I have received my appointment this morning for the hand clinic - next week 5th Nov - at last.

thank you for taking the time to read and reply it is appreciated and if anyone else has any advice it would be very welcome.

Linda

[Hidden]

Look into turmeric and black pepper capsules for pain relief for OA, it works for me and a lot of other people that i know. (don't use if you are on blood thinners)

[PrincessCupcake in reply to Hidden]

I will thank you

[mbd208]

Princess cupcake, I am the same way. You see I am awake at 3:07 in the morning because I only get 3/10 mg hydrocodone a day. I’ll take one or two at bedtime so I can try to sleep through the night and not wake up in pain. But that never happens. Right now yes I would like my hands chopped off and my knees chopped off 😬. I hope you feel so much better and I’m sending all of my positive thoughts and vibes your way.

Your new friend I hope,

MaryBeth

[PrincessCupcake in reply to mbd208]

Thank you Mary Beth

[PrincessCupcake in reply to mbd208]

Thank you for the positive vibes they are much appreciated. I’ve got my appointment at hand clinic Tuesday so I’ll let you know how it goes ❤️

[mbd208]

I also have rheumatoid arthritis and Sjogren’s syndrome and Reynunds syndrome. I may have already mentioned that somewhere here. But we certainly need each other for support because people just don’t understand ❤️

[PrincessCupcake in reply to mbd208]

We certainly do need the support. At least here people understand what each of us are going through. Xx

[cheritorrox]

sorry to hear of so much suffering .. not sure I can offer anything useful as my OA is much less advanced.

For what it's worth I take collagen and glucasamine/chondroitin - honestly don't know how much the supplements help but together with lots of walking (which for now I can do) I'm keeping it at bay

Hope others can help more with advice x

[PrincessCupcake in reply to cheritorrox]

Thank you for telling me how you cope xx

[cheritorrox in reply to PrincessCupcake]

Please keep in touch here as someone may have some more helpful advice ... but people come here at different times rather than daily so keep "clocking in"!

[kohai OA Ambassador]

While I have many comments to different pieces of information, pain, reactions to injections etc that I'd like to comment on, I need to go through your post a few lines at a time, write notes on each before replying.

After reading your may. last post, my heart really does go out to you...

I've gone through many of the things you listed already, and still experiencing others.

As an OA Ambassador for HealthUnlocked and OA Alliance, I do try to log in on a daily basis. It isn't always easy to do when I've been awake all night in pain or back and forth to see clinical nurses every day and the hospital burns unit every two days due to losing grip of a mug of above scalding hot coffee, and it covering three quarters of one leg with 2nd and 3rd degree burns, and quarter of the other leg with 1st degree burns.

Because now, I have to massage a specific cream into inch by inch of the whole burn on each leg three times each day, it has severe consequences on the arthritis in my fingers and wrists, the tennis elbow in both forearms and arthritis in both shoulders (just from applying pressure massaging this cream in so often)... this leaves my hands upwards virtually useless. It also means I can't always type.

But I will always try my best to reply as often and as regular as I can

(Sorry for my typing errors. Having arthritis and Raynauds at the same time wreaks havoc on my keyboard skills, while the muscle relaxants wreak havoc on my brain.. Luckily I don't need or take the latter very often).

Its good to see other members replying with support and recommendations of things that may help you

Members of this community all really do have a heart of 💛 and as was stated above, we support eachother, because we understand and can relate to what eachother goes through, whereas non-sufferers (such as GP's, surgeons and healthy people) don't understand.

[PrincessCupcake in reply to kohai]

Thank you for taking the time to read my post......and my heart goes out to you with what you go through daily.

Last week I had an appointment at the pain clinic, which I did find very useful. They are going to review my meds and refer me to an OT. So i'll see how that goes, all I seem to do is wait for appointments.

This week I saw my GP, who I have to say is very good and does understand the fibro and oa. When i got there i just broke down, this last few weeks have been very difficult emotionally, I dont think I've accepted how life changing these conditions have affected me. I have gone from a independent professional business women to a totally dependent wreck...........I have to rely on my husband for a lot of my daily living tasks, as well as driving me where i need to go. I've never been dependent on anyone before.

I'm glad i've found a new family here that I can talk to and who understand and will be checking in more often.

Thank you all for your responses

Linda

[Inflamo in reply to PrincessCupcake]

Hi Linda,Inflamo,here.I was a master barber for thirty years here,in my little town by the sea,,and I have diabetis,so,lots of things got screwed up.I had a sugar or glucose load of 850 five years ago,and ended up in I.C.U.,and tho I was diagnosed in 2000, with severe osteoarthritis,bi lateral,it seems that the sugar-trauma incident worsened the O.S. and ever since then,the attacks are bad. You try to be as useful and independant as poss.,and end up crippled in pain for three days,paying for your lively bout!I take Clonazapam for pain about twice a week.It's an anxiety medicine,and I learned way back in Natural Childbirth classes that pain and anxiety feed off one another,so,when I take the clon. instead of clutching at my severe pain and becoming immobilized by it,I seem to be able to relax,and breathe and break that connection.Cannabis is very helpful,but,in moderation.It's non addictive,but,if you partake too frequently it can lead to ill health and obesity,higher glucose levels...When I am inflamed,my blood sugar goes higher,and inflamatory drugs hurt the liver,but I take 2 350's a week of Ibuprofen.You'll find the recipe that works for you,I know you will,and be sure to join a stretching class,chair classes are great,because it helps your pain ravaged body refresh itself.Just a couple hours a week will help!sincerely,Inflamo!

[PrincessCupcake in reply to Inflamo]

Thank you for sharing your experiences and what works for you. I am sure in time I will be able to have my own way of coping and at the minute everything is new and overwhelming to me. Thank you

[kohai OA Ambassador in reply to PrincessCupcake]

Like you, I too was an independent businesswoman as well as sole wage earner. I was on enough that allowed my husband to retire at 40 (though I did set rules on that, like him doing the cooking and food shopping while I worked. The "housework" rule went out of the window after two weeks though, I guess I was expecting too much by asking a dirt magnet to clean and hoover )

9 yrs in January coming and I still refuse to accept I'll never have the 'me I was' or the 'life I had' back.

I'm fed up of explaining to doctors that I'm not depressed, I'm just frustrated as heck that I can't do what I used too be able too and that I'm bored out of my mind ! I refuse to let myself become a couch potato watching mundane day long tv with comfort junk food! so I stopped the tv license and sold the TV!

My husband never watched it so he wasn't bothered. To him, the tv just filled a space in the living room.

With my life, and you may be able to relate now, or in the future, its like, deep down I know its all gone, and I'll never get it back, but knowing is one thing, accepting is something else!

Its hard, almost impossible for those who haven't lost so much of their life and themselves to comprehend, that just as we grieve for the loss of a loved one, we also grieve, with the same grieving process over the life and part of us (as an individual) that we've lost.

Each one of us who has lost a career and an active/highly active life, we all wait, what feels like endlessly, for appointments, we all sit staring at walls wishing we could just go and do something we've been doing, and loved doing for years, but our bodies and the pain won't let us.

All we want is for the pain to stop, if it did. we could all have our lives and old selves back!?

Wrong! Not only has time not been on our side, so, many of us would have a lot of catching up to do, or a new job to find, but with conditions that have no cure and don't improve with time and rest (like a broken bone). the only way most of us now would be pain free is if we were given a high enough dose of medication

... then we'd be too flaked out and doped up, that we wouldn't even be able to function.

I think, for me personally, looking forward, accepting that therein I'm in now is only going to get worse is definitely the hardest, after wanting my marriage back!

You have every right to feel as you do at losing your career and independence, its completely natural, don't suppress those feelings, as I said above, its part of the grieving process.

Its also natural to feel guilt, a burden on your husband, a hindrance... many of us experience that, I know I have and still do.

But, before I close, let me leave you with one thought -

Just as you may now, or in the future feel like a burden or hindrance on him, along with the guilt..

Consider how he feels.... He feels like he can't do enough, or isn't already. It kills him inside to see or hear you in pain, knowing its something he can't fix, make better, make go away or carry for you. He'll likely be scared to hug or cuddle you, even massage the areas that hurt, for fear of causing you more pain.

So if, as and when you feel guilty for having to rely on him, remind yourself how useless he feels that he can't do more for you, even if he won't admit to it, he may tell you, in time. Mine did.

As my husband often says to me..

"In sickness and in health doesn't just mean making you lemsips when you have a cold!".

And remind him that all of your emotions and feelings (even the intimate ones) "are all" still there and do work, its your body that's letting you down.

kohai

(Julie)

[PrincessCupcake in reply to kohai]

Thank you so much for explaining how you have/are affected and I can relate to every word you have written - i'm reading this with my eyes filling up because it's just how I am feeling. I know it is only going to get worse and I'm scared as hell about that.

I will start to make a list of everything to ask the OT and take on board what you said about the future.

I will let you know how things go and I hope all goes well for you in January.

Its a comfort to have people here who know what you are going through and you hit the nail on the head - thank you 😊

[kohai OA Ambassador in reply to PrincessCupcake]

I wish with all of my heart I had a valid reason to offer about you feeling so incredibly scared, but sadly I don't even have an answer for that one to reassure myself, letalone someone else.

The feelings of being scared of what the future holds, from my own experiences, is that -

I found I was lost in my own thoughts one day, of my future, how bad it could get. I tried convincing myself that although different parts of me had been diagnosed at different times, my hands were first, back in 1998. Those first two years were horrendous, but I don't remember when exactly, just that it was roughly two years after my diagnosis, my hands went into remission!

They'd still get a bit sore during the winter, and I'd worry it was going to come back, but no, my hands stayed in remission up until the end of last year. Even though my hands are now out of remission, they're nowhere near as bad as those first couple of years.

I digress....

I explained about my hands going into remission because, I guess I was hoping my joints would too, or my spine at some point.

I focused on the possibility of remission which actually stopped me at that time from feeling so scared - Though, looking back, I guess I was only fooling myself, it gave me time to relax a little, do some research about my condition, read what others were going through, what helped, what didn't.

I tend to skip between lines to read things I can relate too. At the end of the day, while we all have OA in here, it affects us, our feelings and thoughts differently. For example you said you can relate to things I've said, but my words are for you, so may not be applicable to someone else reading it. OA isn't something I find easy to give a generic (one size fits all) type answer.

The future is scary, for all of us

But hopefully you'll find, as I did, that taking one day at a time helps. I found I can't plan ahead, not even for tomorrow as I don't know from one day to the next what my OA will be like.

Keep plenty of softened tissues in. Having a good cry can do wonders as a stress relief from worrying over what you'll be like next year, in a decade ... and so on.

Its certainly not easy to cope with losing your life and career, facing your current situation, and what's in store, I'd be lying if I said it was.

It can feel like we're living our own personal hell in an empty shell of the person we used to be. Once you've seen the O.T, if the pain really gets too much, see your doctor again.

Ideally where pain relief is concerned, your dosage should be so you're able to feel the pain, but only so you're aware its there. That way you can gauge a good day and bad day.

Try and work on one day at a time, keep reminding yourself you have no control over your OA so can't predict if you'll be ok enough tomorrow to go shopping or out any where.

One good habit I got into was watching the weather for my area. On wet, damp, cold, breezy, strong sun but cold breeze, those days I try to avoid going out or if I have too, I make sure I go out with lots of layers on.

A few important pointers to note:

° worry, stress, being scared... it takes its toll on the body too.

I lost 10kg in 3 months. Some comfort eat though and don't realise their weight gain, or the problems that in itself can cause.

° Being in pain can cause loss of appetite and OA isn't kind when it comes to how long the pain can last. Please be aware of this because after a while, not only can it lower your immune system making you more susceptible to colds, flu and any other bug going around, it can also cause anaemia (low on Iron and Folic Acid). Not everyone reacts well to Iron tablets as it can cause diarrhea. .. Having OA in the joints and trying to make if up and down the stairs became a huge struggle.

° Isolating yourself because you don't want others seeing you in pain or when you're having a cry is fine, as long as it isn't allowed to become a habit. It can cause voluntary isolation from everyone, which festers into anxiety about going somewhere where there are crowds or more than one person. (I fell into this one).

If you don't already have one, I'd suggest an electric. blanket... one that is safe to be left on its lowest setting all night. I've found mine invaluable, especially as it gets the heat straight into a painful or cold and painful joint.

Linda, the worrying and being scared about the future?, while I could be diplomatic and tactful, the bare facts and truth, I've found, help a lot more where this condition is concerned, than if I sugar coated it...

Those feelings don't go away, but the positive side of it is that once you come pug of being so scared of the future, and what it holds, (only you can determine how long that will be), you'll find that though its a fear that's always with you, its one you can push to the back of your mind. Once I'd figured that one out myself (though I wish someone had told me) the only time that fear of what's in store actually surfaces now is when my pain levels are at an all time high and last for what feels like an age. Luckily though, as the pain subsides and eases, that fear of what to expect in the future disappears into the back of my mind though.

Only you can control how long you let it consume your thoughts and feelings.

I hope what I've said either helps or gives you even a little comfort, its a much harder path we're on than some actually realise. (By 'some', I mean healthy people and a few in the medical profession).

[kohai OA Ambassador]

I meant to add (but for some odd reason wrote something completely different instead)

I hope you hear something soon from the O.T and that they're able to help you. They were for me in the beginning, and all these later, they still are, just in a different way. Their field of expertise is extensive, so when you see the O.T, ask them about all the things they can do and/or help with, both for your current health and as it worsens.

That's something I wish I'd asked originally. It wasn't until about three months ago I was told two O.T's would be coming to see me, both with different skill sets.... (skills I could have done with over the last year and half). So ask all you can while you have tie chance, and please do let us know how that goes

And thank you for posting positively about your experience with the Pain Clinic.

My 10 week pain management course comes up in mid January and I'm a little anxious about it.