Date: 24.05.2011
From: claire
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Subject: I can't cope anymore :(
I've had jaw problems since I was tiny. I would often cry not being able to cope with the pain.
Last year at the age of 18 I was diagnosed with arthritis in my jaw joints, the arthritis is severe and I'm waiting for surgery.
I can't cope with the pain anymore, I can barely open my mouth, it doesn't help when I'm trying to recover from anorexia.
Has anyone got experiences or advice about arthritis of the jaw joint?
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Date: 24.05.2011
From: Patricia
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Subject: Re: I can't cope anymore :(
Oh Claire I feel deeply sad for you having to go through this. Especially since you have had this from such a young age. The pain must be distressing for you. Do you have someone close by who is supporting you? Just after I was diagnosed I had a massive flare in all my joints and my jaw was a problem for a short while but nothing like you are going through. No wonder you feel as though you can't cope. However, I must say to you that you ARE a coper. The level of pain arthritis brings is unbearable and you have had this for sixteen years yet you are still seeking advice and trying to help yourself. Well done you :-) How long will your surgery be?? Does your GP know how difficult it is for you? Could they up your meds for you Claire? Please talk to them and see if there is anything they could do to help you NOW until your surgery. The other thing I thought of is perhaps you could go to your Health Shop and get some protein shakes. That way you will be getting good nutrition but not having to do a lot of chewing. Or perhaps this is something you could get on prescription from your GP (depends if you pay for your prescriptions or not). I hope you will get the help you need very soon and I am sure others on here will give you support and advice. Take great care....x
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Date: 24.05.2011
From: claire
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Subject: Re: I can't cope anymore :(
I don't really have anyone supporting me, I have proffessional support for my eating disorder, I get very little parental support in my life and obv the proffessionals are there to focus on my eating and not my arthritis I'm seeing my surgeon on friday to discuss the surgery, it should have been done by march but they kept putting my appointment back. My GP doesn't do a great deal, they gave me ibuprofen gel but it does nothing for me. I could try going back and begging them though. Ahh protein shakes is a good idea, thankyou Thankyou so much xxxx
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Date: 24.05.2011
From: Patricia
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Subject: Re: I can't cope anymore :(
Hi again Claire :-) Really sorry to hear that you don't have much parental support. You must find that very difficult. You could do with someone 'on your side' as it were. Do you have a close friend who you can rely on? Not necessarily your own age. I know from my own experience that we all need someone who we can talk to on a personal level especially so when we are poorly. If you can manage the pain until Friday you can discuss it with your surgeon. I am certain he would be able to prescribe some pain relief for you. You must let him know how you feel and what unbearable pain you are in. Ibuprofen gel won't do a thing for arthritis type pain like yours (and mine!). You must be a strong girl to cope with that pain and only ibuprofen gel. I couldn't and i'm an old un!!!! There are certainly stronger pain meds than that but I don't want to recommend any because I don't know what would suit you. The surgeon/GP will know. If you can't cope with the pain another day try to get an emergency appointment tomorrow with your GP. Please don't suffer the pain. Hope you feel a little better this evening. Take great care and keep in touch....x
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Date: 24.05.2011
From: claire
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Subject: Re: I can't cope anymore :(
I'm afraid I don't really have any friends I can lean on, I seem to be the one that helps them cope with all their problems in their life but when it comes to me they don't want to know. Thankyou so much, that's really sweet of you, you nearly made me cry haha. Yeah I'll hold until friday and hope he does something for the pain. You take care too and I will do :) xxxxx
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Date: 24.05.2011
From: Paula
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Subject: Re: I can't cope anymore :(
Hello Claire Hope you are feeling better when you read this. You've come so far and you are now at the last hurdle...you will cope with it all, just hang on in there, only a few more days to go before you see your surgeon. Write everything down that you want to tell him, let it be known that you have a list when you go in, ask about more effective pain relief, you deserve it. Patrica as already given you good advice, the only thing that I can add is to contact the Arthritis Care helpline 0808 800 4050 it's free and then you can talk to someone. They also have a forum that you can join free of charge,just google their name and follow the links. Their forum is more active than this one and lots more people post, so someone there might have had the same as you and can help. You've come this far and coped with it all so well, you really are a star and so special. Paula xxx
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Date: 24.05.2011
From: cookie
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Subject: Re: I can't cope anymore :(
ah honey were here to help, not ideal i know but by all means feel free to let off steam , rant etc, let us know how you get on with your surgeon xx
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Date: 25.05.2011
From: Maz
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Subject: Re: I can't cope anymore :(
Hi Claire, I know I can't help much simply because I am not from UK but just thought I would tell you that I am on the other side of the world & I care !! Let us know how you go with the surgeon & if you have joined the other more active forum suggested by Paula.
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Date: 26.05.2011
From: x kerry x
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Subject: Re: I can't cope anymore :(
hi claire, ive also had servere problems with my jaw since a very young age. Im 25 now and still suffering. It was put down to an abnormal temporal mandable joint and i was sent for physio and given a gum shield to try and re-align my jaw, neither of which have worked. After reccently being diagnosed with pa, theyve now decided the pain in my jaw is from the arthritis. I havnt been put forward for surgery yet. I was given amitryptaline to relax my jaw muscles at night as i tense my jaw so bad that ive cracked my teeth, and i wake up in the morning unable to move my jaw at all, it siezes up and i get shooting pains up my head and down my neck when i try to move it. That worked for a bit but then started to disagree with me, so i was moved onto gabapentin, but i fell pregnant and had to come off it before it had a chance to work.
For me, i find muscle relaxants help alot, they just stop me clenching which in turn stops the pain. Its such an awful place to have pain like this....i have to think about everything i eat...will i be able to fit it in my mouth? Will i be able chew it? I find myself having to stop eating even though im still hungry because my jaw hurts so much i just physicaly cant chew any more. It hurts to talk, yawn...even smiling is a painfull affair and even when my jaw is still i get shooting pains, aches and migranes. My jaw tends to crack, snap or pop when i open it, and locks alot of the time. When i yawn, i have to hold my jaw in place to stop it opening too far. Sometimes it feels like its just going to snap :( Maybe ask your doc for some kind of muscle relaxant to try until your op, just to see if it takes the edge off the pain. If u wana chat more or need an understanding shoulder to cry on, and u have facebook...let me know and ill add u on there so u can vent whenever u need to xxx
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Date: 26.05.2011
From: Lee
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Subject: Re: I can't cope anymore :(
Hi Claire I am so sorry to hear of your condition it must be terrible and as everyone has said just to use ibuprofen gel you must also be very brave. Your GP or Surgeon will probably perscribe you something stronger after the operation but i cannot say what either as everyone here finds different pain meds work better than others. I know my local GP has support groups and or Psychiatrist person who you can talk to officially or unofficially if you are worried etc. They are not just there for the loonies like me but can offer support in other areas. Remember also if you want to vent anger or cry on these boards then do so as we all have and know that people on this board are very supportive and kind and sincere as we are all suffering in one way or another. I hope you get some relief after the Surgeon or at least a better pain management which hopefully will lif your spirit also
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Date: 27.05.2011
From: Patricia
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Subject: Re: I can't cope anymore :(
Hi Claire :-) How did you get on today with your surgeon? Have you managed to get some pain medication? Hope all is well...x
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Date: 30.05.2011
From: Dilizjo
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Subject: Re: I can't cope anymore :(
Hi Claire and a big hug from me, I know it's not physical but it is truely meant. I personally have found these forums a great support since I have been diagnosed with RA so keep visiting and sharing however negative your feelings maybe you can rest assured that we all empathise:)
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Date: 02.06.2011
From: Izzy
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Subject: Re: I can't cope anymore :(
Hi Claire, I was also diagnosed with RA in my jaw joints when I was 12 years old and I am now 18. I am in pain everyday and find eating difficult, and I also have a facial deformity because of the arthritis. I take medication for my arthritis and I also wear a splint every night to help me stop grinding my teeth and to help lessen the overbite. It has helped with the overbite slightly, although I do find it uncomfortable to wear and often find that my jaw is stiff and can lock in the mornings.
I know that you're looking into more effective pain relief but perhaps you could ask whether a splint would be helpful in your case? I hope that everything goes well and that you feel better soon as it sounds like too much for anyone to take on alone.
I've found that this is a wonderful place if ever you need to just talk to someone or want some kind of support. I'm sure that your GP should also be able to recommend you a some support groups, websites, or perhaps a counsellor, that are for people going through similar situations. I know that you can also find similar information in some libraries, town halls, or churches.
I really do hope everything goes well. Best wishes.
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