OA Pain! Question?...

Rebeccarockchick

Hi All,

I have had to come off naproxen that I have taken for two years + for OA, due to now being on blood thinners (had DVT-2 blood clots,very scary 4 weeks ago). I also take tramadol and solpadol (not together). I don't take tramadol all the time, I don't think it does anything anyway for my pain. I use wheat heat bags, re usable ice packs, i have tried epsom bath salts. I was wondering as I know a lot of people cannot take naproxen or anti inflammatory for various other reasons, is there anything similar I can ask the doctor for? Since coming off naproxen (I though it didn't do much either) the pain in my feet, knees, hands,jaw and back is just awful.So I realise naproxen did actually do a lot. My joints are sooo sore. My knee is swollen. My docs are the type where I have always had to ask them, when I ask I get. I know your not all docs or medically trained, I do understand but any advice would be great.So Thank you for taking time to read

I am struggling a lot. The pain from deep vein thrombosis is horrific too. I struggled walking before but now I cannot walk far at all with out feeling like the muscle is ripping in two, as well as the OA pain.

I am trying so hard to keep busy to take my mind off it. I went shopping yesterday only to one shop with an old friend, that I catch up with every now and then. She has no concept of my issues no matter how I have tried to explain. I walked round the shop in agony and struggled to stand grinning and bearing the pain when she casually tried on clothes for ages(sounds like I am being awful to my friend after all we was out clothes shopping!)...I was in so much pain when I got home, I couldn't walk by 8pm my knee,back and foot was so bad. She had gone home by this time oblivious to it all. Unless I sat with her for a few hours and warbled on about how I can only walk a short distance, explained every ailment and medical condition I have, and I suffer after an event/outing then maybe she would half understand. But anyways think I will stick to my usual internet shopping, was not worth the pain!

stickywicket

You are certainly going through the mill right now on several fronts. I can't really help on the meds front. I'm not allowed NSAIDS either but my meds for my RA are doing a good job and I only need the odd spot of pain relief. It's difficult because, for OA, it's usually NSAIDS or painkillers or both. I don't know what else your GP can offer but, in your current circumstances, it might be worth a visit and an ask.

With the wonderful benefit of hindsight :roll: , I think the shopping trip was probably a bad idea right now Does your area have a Shopmobility scheme which would allow you to borrow a disability scooter for such trips?

eminel

Heya. Sorry to hear you are suffering. I have OA in my neck. I was given nsaids by my gp but they weren't helping at all. I then came across this article

http://www.arthritisresearchuk.org/arthritis-information/complementary-and-alternative-medicines/cam-report/complementary-medicines-for-osteoarthritis/glucosamine/glucosamine-sulphate-oa.aspx

Which prompted me me to give the glucosamine sulphate a go instead. I bought them from Holland and Barrett.
I have been taking them for around 3 weeks now and have noticed a marked difference in the reduction of my pains. Especially the headaches I was getting. I still get the headaches but they're not as severe and not as often.

Check out the article and see how you feel about the research and whether you fancy giving these ago yourself.

All the best
Michele xxx

dreamdaisy

Pain is part-and-parcel of our conditions and it is very hard to live with. No matter what steps we take the key words are 'temporary relief' because that is all they ever offer. Forget about explaining it to people, they can't understand because for them pain is a temporary thing which clears up. Over my arthritic years I have had to change what I do and how I do it, I have around forty affected joints (including all my toes, both ankles, both knees and the hips are joining in) - for sure the best thing I did for myself was buy a rollator with a seat. This means I can sit and rest if needed, I can last out a shopping trip, I can manage to go for walks, basically I can get out of the house and that is important. It's not the usual 'square' one (they encourage bad posture and poor walking style because you are walking behind it) it's an L shape and I stand, upright, between the struts. Arthritis can be an isolating condition and it's important not to let that happen. I hope things improve for you soon - maybe a chat with your GP is in order and it's sensible not to begin any supplements until you have discussed it with him. DD

Rebeccarockchick

Hello everyone, thank you for your replies and support. Would have got back to you all sooner but was laid up in bed with migraine( I take medication for this every night to try and avoid them but still manage to get one every now and then)...I do sound like I have a lot going on...one thing after another! I am going to make an appt at the doctors to ask what else I can do in regards to pain meds but also the glucosamine sulphate as this sounds like something that is worth a try, but yes will ask the doctor first as I am on all kinds of medication so would like to double check it is ok. Thank you for the link.

It is very true what you say about the pain. And thank you for the advice of what I could do to help me overcome my barriers. It does help to to hear others stories and how you have managed to over come things.

I should try and think a bit more about what I can do to be able to do the things I enjoy, not avoid them and not isolate myself....

Thank you again your support is much appreciated. You all have your own things going on and pain to deal with but take the time to share your stories and ideas. Hopefully I can do the same for you at some point

dreamdaisy

It is very easy to focus on what we cannot do rather than what we can. I know because I have done exactly the same and sometimes it's easier than having to make a ridiculous amount of physical effort to achieve (by other peoples' standards) not a lot. We have to re-define our limits, set our achievement quota lower than we might like, rest when we can etc. etc. etc. but when things go right (and they do, learning to spot when is a whole new skill!) then we get our reward of feeling better about ourselves. DD

barbara12

Hello and welcome to the forum
I have OA in many joints, and like you I cant taker any antiinflams ..and like you say , they dont seem to work until you stop taking them.
I have cocodamols and they dont really help, for my back I have pregabalin..that does help.and also have pain patches that I am suppose to wear all the time..but I don't ..I do use the epson salts for my feet, but you do need quite a lot..and I find it really helps..the glucosamine didnt help much, but I know that others find it does ...have you been referred to a pain clinic at all, depending on were you live they can be very good, they organized injections in my hips, back hands and knee..some worked some didnt..so its a matter of what helps you, I do hope you can get some relief very soon..x

Rebeccarockchick

Thank you again for the advice and welcome. I am hoping to find some new hobbies and interests, I just need to change a few things around until I find my limits. It doesn't have to be negative. Experimenting can be fun..I had to finally give up the chinese salt and pepper chicken last night due to my jaw issues so went for softer soup and spring rolls soaked in sauce to soften them up, but you know it was really nice and It wasn't that bad!! !! I have to keep positive! It is true most people would not understand the amount of effort it takes just to eat a normal meal, walk around a shop or clean a house...I am hoping to learn the pacing skills but that comes with time and trial and error.

I have heard of this pregabalin/patches before I may mention this to the doctor also.I have always held back as I thought if I go on anything stronger what happens in the future when things get worse. I guess you also may have thought this.But then why suffer now. I had a chat recently with a surgeon about the pain clinic, he said he was going to write to my doctor and advise that I should be sent to one. I do have some experience of them as my husband has suffered for years with bulging discs and sciatica and has had around 8 lots of jabs(lost count now)and like you some worked and some did not, he also has had back surgery. I really don't know why my doctor has never sent me. I think my doctors are the type where you have to ask them. I have been to the doctors pretty much once a week for the past 6 months + with pain etc so you thought they might have been good enough to refer me.

I think my doctor gets overwhelmed with me as does any physio I see. I don't know if anyone else has had similar issues but when you have so many things going on with so many joints and ailments/conditions its like they panic. I feel like I need a week with a Doctor to explain things. My knees are really bad at the moment, but one day my back can be bad or my feet or something else. So If I go to the Docs to tell them this they don't know what to do. They seem to just focus on one joint and I am like hang on a minute ...but every where hurts! :?

Maybe I did not use enough epsom salts, they didn't come with instructions so thanks for that:)

Nanad

Hi

I am quite new to this and I have not answered a post before but like you I can't take most anti inflammatory's and Naproxen did not agree with my stomach (I take Omeprazole and folic acid for that every day) - I get diazepam 2mg and 5mg, co-codemol 8mg and 30mg and I take what I need, only when I need it. I have OA in neck, upper and lower spine , hips and also have bone spurs in my shoulder, hands and elbows. Sometimes all of it hurts and sometimes only one or two but fortunately I have a great doctor who allows me to doze myself. I have a memory foam topper and i LOVE my hot water bottles. I guess what I am trying to say is find what works for you and stick with it

I do like to exercise and i miss hiking/walking for miles but when I am sore I can't do anything at all so then I read, do Sudoku, crosswords, and jigsaws, anything that keeps me still, I have also learnt that the housework can wait for another day .

Learning to cope with OA is difficult as it does impact on your daily living however there are great tips on here that do make everyday life easier so troll through the site and find what would help you best. The advise on here is exceptional and really helpful

Nana D

Rebeccarockchick

Thank you for posting Nana D it is very much appreciated. I have been having a good look at the site for quite a while and has helped a lot, I will keep on looking tho and see what other tips I can pick up. Your advise is good I should find something else to keep me busy when I cannot do the more active things I like. Sounds like you have a lot going on too but have found some ways of helping yourself. I probably do need to invest in a good mattress..I do have a topper but it has seen better days!

I have always taken omeprazole for acid, previous to me taking naproxen for a couple of year. I take 30mg/500 solpadol ,mirtazapine which is an antidepressant, topiramate for migraines, rivaroxaban for my recent deep vein thrombosis and tramadol when I need it (but thinking the tramadol is what keeps giving me recent migraine attacks).So really I am only taking solpadol as a pain killer.

I like my heat wheat bags but think my best buy was the re usable ice pack..my fave by far!

I am going to have a good think of some things that I will enjoy doing and put something into place. I might find a hidden talent! I know it is important to keep the hands exercised as well as the mind so that will be my focus. Thank you everyone for all your advise. I will let you know what I come up with

stickywicket

I think it all seems a bit new to you still as, despite all your problems, you were working until very recently. It must seem strange not to be and I suspect a kind of restlessness that makes you feel, despite all your difficulties, you should be up and doing all the time.

I've heard that taking up art is very therapeutic in all sorts of ways. We've had one or two amateur artists on here though maybe not currently. I think we each have to find our own obsessions ie whatever takes us right out of ourselves and out of some of the pain. For me it's cricket. If I can't watch it I listen. If I can't listen I watch the scores moving on the cricinfo website. I'm a hopeless case but a happy one

Rebeccarockchick

Yes..i totally agree, I think previous to this chapter I have always been able to work or do most things to a reasonable standard. The last time I was unable to walk or do other activities was around 6 years ago when I became disabled by spd pelvis pain when I was pregnant. I was unable to walk without crutches and that was just a shuffle. I had a c section because of it. I have had episodes of different pain during my life like back pain, or jaw pain but never all at once and now as I have aged and the wear and tear has got worse and my Ehlers danlos has got worse I have gone from a active working person in low/medium pain to a quite disabled, unable to work medium /high pain person in a matter of months.

I never thought of art...thank you for that..i may just give it a try! Always fancied writing a book so thats something I might stop making excuses about and crack on with! I'm sorry I cannot say I share your passion for cricket..i have never followed it, so i wont lie and pretend i understand it, its good to find happiness, its nice to hear of peoples passions and interests...thankyou for sharing...

alumina

You really are having a bad time. Pain can be very debilitating. Like you, I try to hide how much pain I am in when standing around and so on. I have almost got to the stage where I don't look forward to going anywhere because of the extra pain it will stir up and have actually given up a lot of the social activities I used to enjoy.

How are you sleeping? I sleep very badly because of the pain and know how awful it is to be so tired. Is there any possibility of referral to a pain clinic? I don't know of course whether that is appropriate for you it is just in my mind because of a recent suggestion made to me if the orthopaedic surgeon can't do anything about my spine.

It is difficult for people who are fit and well to understand your pain and, if you are like me, we probably don't make it easy for them to understand as we put a good front on it!

Hope you get some good sleep and some relief from your pain.

Rebeccarockchick

HI...yes I have a doctors appointment tomorrow, when I went to see a surgeon in June about my foot he suggested a pain clinic and said would write to my Doctor. The copy of the letter from the surgeon didn't have anything about the pain clinic on it so I am going to ask tomorrow about a referral. I am also going to discuss pain meds and vitamins as you all have kindly suggested above for me. I have just started a CBT therapy course (first one next week), for 6 weeks, one to one where we are going to talk about relaxation and helping myself etc so will see if that helps.

As for sleeping, now that is a strange one for me. This is probably going to sound a little bizarre. As I have ehlers danlos syndrome my ligaments lack collagen and this makes them loose. It means my body is flexible and I can move my body into strange positions and beyond its normal range. When I sleep, I move my body into these weird and wonderful positions and this wakes me up several times a night, usually and most often its pins and needles/numbness. Mainly in my hands, as I fold my hands right under my chin and use them to support my jaw whilst I sleep. It is the same for my ankles,when I am lying in bed, in a resting position, my feet flop forwards like a ballerina pointing toes and the soles of my feet are almost flat on the bed, if that makes sense at all. I am woken most nights in pain from knee and back ache also. I do have a wedge pillow at the moment to raise my leg. I struggle getting out of bed in the morning due to the medication. I am stiff as anything...takes ages for that first walk to the bathroom.

You sound like you also sleep badly due to pain and it must be upsetting/frustrating that nothing can be done to help your spine. Yes we do put a good front on. I am trying hard for it not to define me and although it may sound doom and gloom I am remaining positive...I was doing really well, getting the DVT was a big knock down for me. It seems to have flared my OA and my ehlers danlos. I understand what you mean also about avoiding situations and it is hard to get the balance so you do not become unsociable and isolated. I have had some good advice and support on this thread. I will let you all know how I get on.

alumina

Rebeccarockchick wrote:

...I am trying hard for it not to define me and although it may sound doom and gloom I am remaining positive

I too try hard not to let my physical health define me. I always say that I am not a disabled person but a person with a disability. Twee and said by many I know but it is true and for me, there is an important distinction there.

Do hope you get on well tomorrow.

stickywicket

alumina wrote:

I too try hard not to let my physical health define me. I always say that I am not a disabled person but a person with a disability.

Good point, alumina. I like it

Rebeccarockchick – keep us in the loop.

Rebeccarockchick

Hi All, I thought I would give you a quick up date. I have been to see the Doctor this morn. He has raised my mirtizapine antidepressant from 30mg to 45mg, to help me cope better, I explained my anxiety and worries. He wants me to start taking amitriptyline, first 10mg then increase until on 30mg. This is for my back pain, shooting pain and joint pain from the bulging discs/trapped nerve and degenerative disc disease. He said to stop taking the solpadol and to take tramadol with paracetamol to boost it for the overall pain and mainly my knee pain, up to four times a day.(I told him I thought the tramadol gave me the migraines-he said its probably because I was taking it with solpadol) He said he will not refer me yet to a pain clinic as they can only offer injections and he is sure I cannot have them now as I have DVT.He said no point going all the way to hospital when he can help me just the same. He said to come back in four weeks. He said I will feel better once the pain is under control and I feel in a better place mentally. I think I will up each one over a couple of days, I do not think I will be able to function if all of a sudden I jumped to such high doses of everything..yes probably be pain free but probably because I will be high as a kite or asleep! I have not wanted to be on all this medication but I know I have reached a point where I need it. He said once I feel I am in less pain then I can drop back to solpadol and lower the amitriptyline so that makes me feel better knowing I am in control of it all.

I totally forgot to ask about glucosamine, well I am sure I will be back at the Docs before 4 weeks so will make a note to ask again...

So I have plenty to be getting on with. Sorting my new pain meds and thinking of some new hobbies and interests to keep me busy. Thank you again for the support:)

And yes well said alumina...I really like your saying too!

stickywicket

That sounds like a good appointment. Your doc has clearly listened well and the change of meds will hopefully make a big difference.

He probably said to come back in 4 weeks in order to give this new regime a fair crack of the whip so, unless there's something serious, I wouldn't personally go back earlier.

With all your troubles I think glucosamine will not help a great deal. It used to be available on prescription until it was decided the benefits did not warrant it. Having said that, Mr SW takes it daily and feels it does make a difference. But the difference is that he can play a round of golf twice a week. I myself can't even swing a club without dropping it

alumina

I'm really glad you had such a good appointment in that the doctor listened to you and seemed to give in depth and sound advice. I do hope that the change in medication helps you. I am sure that you are a long way from where you would like to be but at least you have good reason to hope for an improvement.

Try to relax and go with the flow! :cheers: