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Date: 06.12.2010
From: kylee

Subject: doctors and rhummy depresseed

i all we i went to my doctors to sort my pain relief out as i found i was taking more and more of my pain meds so i have been given high dose of cocodemol and my doctor has pushed my rhummy appointment forward as after being diagnosed 5 yrs ago i have finaly cracked and lost the plot i feel depressed moody snappy and im taking everything out on the people closest to me and im pushing them away. im finding it hard to do things now like opening the film on the milk cartons.
i gave up work 3 yrs ago as i couldnt cope with the pain flares and tiredness. it was a hard descition as i loved to work i enjoyed socializing and i liked to meet new people. i am realy struggling emotionaly now coping with the fact i dnt work and cant support myself and feel i am spongeing off people. my husband still works part time and i feel that his wage is his and i shouldnt touch it not because of him its just how i feel.i feel useless nd have no purpose which is a rely hard thing to cope with.
im sick of feeling tired all the time having to rely find the energy to get up to see to my daughter in the mornings.
i just dnt no how to put all this to my rhummy as i have also rely had my confidence knocked and find it so hard to talk to people. what do i say to him how do i get him to listen to understand that i realy am fed up of going round and round with all different meds. is it worth even telling him how i feel as he cant wave a wond and magic it all away. he might think im some kind of freak.
sorry for rambling on just need some advice of how to approach this subject with him
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Date: 06.12.2010
From: KayJay

Subject: Re: doctors and rhummy depresseed

Hi kylee. If you are so tired you can't but help to feel like you do. Don't beat yourself up about it - it's not your fault. Would you feel better if you just wrote how you feel down and show it to the Rhuemie ? Or could you get someone to go with you who could explain how this is affecting your life ?

No they can't wave a magic wand but they should be trying to make you feel better so you must let them know how you really feel. Also have you had blood tests to rule out anaemia? When I was anaemic I just sat and cried because I was that tired. I do hope they can make you feel a bit better - have faith - you will feel better ;0)
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Date: 06.12.2010
From: kylee

Subject: Re: doctors and rhummy depresseed

i no i havent had blood tests for that i did have some done for my vitimin d levels and they were low so now take vit tablets. i find it easier to write how i feel rather than talk as every time i try to talk about my feelings i end up being very emotional however i think i would feel stupid walking into the room and hnding him a letter probably more embarresses than an idiot. last time i felt like this my rhummy could just tell how i felt and he put me in hospital for 10 days which gave the rest i needed but i hted every miniute of it
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Date: 06.12.2010
From: dolly

Subject: Re: doctors and rhummy depresseed

hi kylee. i would like to share my thoughts with you. you might have read some if my posts already but if you haven't, i am 56 and have had RA for 41yrs. what i see when i read you story is if you have to keep increasing your pain meds you do not have the right "cocktail"[mixture of meds]. your pain meds are not working, if they were you wouldn't need so much. my cocktail is humira, prednisone, and hydromorphone [pain killer] also called dilaudid. prednisone is one of the best anti-inflammatories out there. yes it has terrible side effects just like all the other RA meds but only if you're on them for a long time. i take 10 mg per day but if i have a "flare up" i will increase to 20 for two days then go back to 10. if you increase for only two days you don't need to wean yourself. i know prednisone can help cause i've been on many different anti-inflammatories and always stayed with prednisone. if you can get on prednisone for only a couple of weeks and a different pain killer, one that "works" things will be better for you. if you haven't tried prednisone before ask your doc if you can try it temporarily to get control over your "flare up". prednisone works in just a couple of days, not like other RA meds that take a couple of months. think about it and ask your doc then get back to me. i think it's the increase of your pain meds that are making you tired. what i was told by my specialist was if your pain med is not working at the prescibed dose that he gave you they will just make you nauseous, headachy and very irritated. talk soon. dolly.
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Date: 06.12.2010
From: bsk

Subject: Re: doctors and rhummy depresseed

hi Kylee, I'm not here to give you advice as you should take that from your doctors as we are all different. All I can say is I was feeling exactly as you describe and I 'gave in' and took an anti depressant. It was the best decision I've made as am feeling a lot better. Things are just the same but I am coping better and feel much less stressed. Have you talked to your GP about how you are feeling? I am also getting some other support as well. You deserve to have a bit more help.
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Date: 06.12.2010
From: dolly

Subject: Re: doctors and rhummy depresseed

hi again kylee, i forgot to mention i've recently started a new medication called amitriptylene. it's a anti depressant and helps with pain control. i'm just trying to help you by suggestions not advise like bsk seems to think. i really do know how you feel. i've been there so many times. you take care o.k. dolly.
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Date: 06.12.2010
From: KayJay

Subject: Re: doctors and rhummy depresseed

Yes dolly I can also recommend Amitriptylene !! I used to have horrendous neck pain which sparked off a Migraine then I was vomiting from the Migraine - NOT a good situation for a Diabetic like me. It really got me down as I was suffering from them nearly every few days and it would lay me out for the day. The GP precribed the Amies and they were like a miracle cure. No neck pain anymore [ apart from the usual ache with Arthritis, and I still go dizzy when I look up ].But whoever invented them deserves a medal. They are also prescribed as an anti depressant like my little sis has. And although she used to suffer with neck pain that has gone now. So a great double whammy.
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Date: 06.12.2010
From: kylee

Subject: Re: doctors and rhummy depresseed

hi i would first like to say thankyou all for your post they have all made an interesting read i had thought about going down the route of some kind of anti depressant but was afraid howd i be ie wld they mong me out like i was doped up or do they just lift your mood.wld anti depressants just hide how i feel or in time wld my feelings just disapear maybe. i was also frightened about asking my gp for any kind of anti depressant or even to tell them how much im NOT coping as i have a 3 yr old daughter and they might think if i cant care formyself how can i care for her that proberbly sounds realy daft to some people but i feel that someone is trying to take everything away from me my enjoyments my mobility my independace ect ect. my pain medication has been celebrex which i m on max dose cocodimal and during flres i tend to double up doses and add a few pracetamol in there. i have so far tried sulfa hydrocloquine (excuse spelling) methtrexate laflunomide nd now im on nti tnf enbrol and laflunomide. the new meds seem to have made slight difference regarding flares s i still have them but the sweling is a little less than usual but the pain is the same i m finding i am now hurting without the flares being there. i just hope when i see my rhummy he isnt gonna hold his hands up as he has tried so many different things with me regarding getting my ra under control i seem to be a bit of a puzzle as he drew of 5 seringes of fluid from my knee the other week yet my bloods always show there is no inflammation yet we both no its there i have seen it being taken from my joints.
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Date: 07.12.2010
From: bsk

Subject: Re: doctors and rhummy depresseed

hi Kylee, I was worried about talking to my doctor about how I was feeling too. I don't have children like you but still concerned about how I would be seen by everyone. As far as I am aware, taking an anti depressant (if that is what the doctor prescribes!) won't be seen as a failure. Rather, it is a strength sometimes to admit when you need help. It may be that they can offer you some talking therapies as well, I don't know but it's worth finding out if there is anything out there to help you cope better. It's not your fault you've got arthritis and we all find it difficult. You are definitely not alone in that.

A note about amitriptyline: it is used for pain, particularly nerve type pain but in small doses (10/20mgs or so). It does not work as an anti depressant at the lower doses. The higher doses (100mg or maybe even 200mg) are used as an anti depressant but it is generally not prescribed for that these days as there are better, more effective ones on the market. I found it made me very sleepy the next day so I take the smallest dose of 10mg. Anti depressants did make me feel tired for a couple of weeks and then that wore off. I am feeling so much better.

It might be that you just feel better for off loading to your gp of course!

Another thought, have you got any practical support at home? Have you been in touch with an occupational therapist? If not, do get in touch with them via Adult Services at your local council. They can refer you for an assessment to see if there is anything available financially or practically to help you care for yourself and your daughter. It is really worth doing that. Don't think they will think you are a bad mother! They are more likely to think you need some help!

Like you, I have swollen joints but no sign of inflammation in my bloods. I think this is because the medication masks the results. I'm on steroids and that is true for them. Consultants know this to be the case. As I said earlier, everyone is different in how their body responds and they do understand that.

Take care and I hope you get some support soon.
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Date: 07.12.2010
From: Paula

Subject: Re: doctors and rhummy depresseed

Oh Kykee

Mu sympathy really goes out to you with how things are at the moment for you. I've had RA for just over two years now and most of the time I cope with it well. Children grown up and left so there is just me and husband, so I can potter about doing my chores when I feel up to it. I know I am one of the lucky ones.

The best and most important bit of advice that I can give you is to talk about it to your consultant, you really must tell him just how this illness is affecting you. If you can't talk to him, could you email him or his secretary and put down just how you are?

Does your hospital/GP's offer any sort of counselling, some areas do, I have read on other forums that this has helped people alot.

Can I suggest that you ring up the National Rheumatoid Arthritis Association (NRAS), they have a helpline and will get a volunteer to ring you up to talk to you. All volunteer's have got RA so they know exactly how you feel. The number is 08002987650 (freephone).

Have you been offered a steroid injection? These do help alot and can last for a few months.

I am a little worried about you doubling up on your pain killers. Have you been told this is OK? I don't want to pry but I am concerned a little.

Lastly, do not give up hope of having some sort of life with RA, there is still options of different drugs for you to try, but if you don't tell your consultant how things are he may think that you are coping. You have said that you are feeling a bit better with enbrol, from what I have read that can take up to three months before it really gets into your system and does it magic.


I haven't been reading this forum for long so forgive me if I have got some of my facts wrong about you, ie steroid injection.

Just hoping that things start to improve for you.

Paula
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Date: 07.12.2010
From: Amy

Subject: Re: doctors and rhummy depresseed

Kylee I hope your ok, if you need someone to talk to just give me a wee message on facebook. Don't feel guilty about how your feeling, not everyone understands and it can be very hard some days. Don't let them get to you sweetie <3 x
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Date: 07.12.2010
From: kylee

Subject: Re: doctors and rhummy depresseed

hi all thanks agiain for your messahes yes i have had many steriod injections that work for a week then tend to wear of im only allowed to have 3 a year im not suppose to double up on meds but some times i have to so the pain eases. i am witing for my specialist to book me in to see him then i can probably get a lot of this of my chest. verything seems to have hit us all at the moment my husband is trying to cope with the death of his farther tht was only diagnosed with cancer in october and died in november so that ws a masive shock to us all so i think this hasnt helped with my moods ect as we were very close to my husbands dad.
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Date: 07.12.2010
From: Dalton

Subject: Re: doctors and rhummy depresseed

Hi Kylee, I know exactly how you feel - I have a 2 year old and a 7 year old and have sero positive rheumatoid arthritis. I was diagnosed 8 months after my little girl was born and the consultant believes this triggered it i.e. the hormones from the pregnancy. I have been, and continue to go through horrendeous pain and depression but Im not prepared to let it beat me and control my life. I take 20mg methotrexate, 4 sulphasalazine a day every day and have tramdaol and Amitriptyline 25mg for pain relief. The only prescribe amitriptyline in high does for depression. 25mg is used for nerve pain associated with the RA. I get numbness in my hands and fingers from the RA trapping nerves in my wrists and the pain in the cold weather is unbearable but try and dig really deep to stop it from destroying you. I am a great believer in being positive, I know its hard and believe me ive been to the lowest point and back with pain but for me its the only way to allow me to carry on with life and enjoy my children by refusing to let this awful disease destroy.
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Date: 07.12.2010
From: kylee

Subject: Re: doctors and rhummy depresseed

hi dalton thnkyou for your message it is realy hard having ra nd young children as i alwys feel draged down by it and cant enjoy things with my daughter i cant get on the floore to pplay games with her as its so uncomfortble she is now getting pretty hevey nd the simple tasks of lifting her into the car to get her in the car seat seems such an effort, think the cold is certainly not helping as the joints hurt all the time especialy in my hands. and fingers. hopefully i can get something sorted especialy with my moods when i see my specailist
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