Fed Up and feeling alone …..

mickey2009

Where do I start ……… not sure I have a question just feeling very fed up at the moment and want to share it with anyone that might actually understand.

After years of pains in my right arm and then in the right foot/knee, I was finally told in April 2009 that I have rheumatoid arthritis which came as a complete shock to me at the age of 38.

I have been taking sulphasaline since day one (now on 4 a day), had a steroid injection last year and also prescribed co-codamols (30/500). I don’t like popping pills but I guess that went out the window last April!

Over the last couple of weeks the pain in my arm just seems to have got worse, I’ve tried to increase the dosage of the co-codamols but then feel ‘spaced out’ for a few hours after taking them so reduced them again.

Normally taking these and resting the arm in the evenings eases the pain but not this time and I don’t understand why – anyone know if the cold weather could be a factor or is that just an old wife’s tale?

I’ve even bought a Bioflow bracelet to see if that helps but the jury is still out on that one – right now, feel I wasted my money on this. Frustrated that it doesn’t seem to be helping!!

I work full time in front of a computer although I do use an ergonomic mouse but still this is probably aggravating it but feel bad about taking time off sick. We have a policy that we are allowed x number of days off sick in a year, anymore and we start losing money on days off.

I just feel so low at the moment, you tell friends and family about how you’re feeling and they try to understand but look at you as if to say ‘its not that bad, just get on with it’.

Sorry to moan and groan on and on …… tired, fed up and cold - maybe a kick up the bum may help

skezier

Hi Mickey,

Sorry your feeling this just now. It can be so frustrating and horrible at times. The bio flow’s may help you never know. I ware one if I am not too swollen round the wrists and though I don't think it makes much difference I still wonder if it is if that makes sense?

I been on sulfa since June or July, its not doing much but it did for about 3-4 weeks so fingers crossed for you there as well. I don't get a lot of understanding and well it doesn't help either but I promise you in time it does all get easier. I hope things soon improve for you and am sending you a ((( ))), a promise your not alone and hope tomorrow will be better for you. Take care Cris

breane

Hi Mickey,I can sympathise with you over the arm pain.I was diagnosed with RA and OA last year and over that time I have had quite bad pain in the top of the arms which is always worse at night once I get to bed.Usually keeps me awake all night. Saw the consultant yesterday and he suggested a steroid injection might help.I had four x rays done on the shoulder as he told me the arm pain is 'referred pain' from the shoulder.I've been taking co-codamol,sometimes it helps and other times it doesn't.I've also tried Tramadol which is a lot stronger but it doesn't agree with me,leaves me feeling giddy with nausea.I think a lot of us gets this arm pain but not sure if the cold weather makes it worse as I have the pain during the warmer months too.Hoipefully other members will have more advice for you. Take care,Breane. :P

joyful164

Hi
You must be feeling pretty shocked at yourself!
Taking too many co-codomols do tend to upset the whole of your system and it would be beneficial if you went back to your gp/rheumatology consultant if you have one and see if you can be put onto Tramadol. Co-codomols can tend to get you very constiipated after awhile and that does not help the pain
Ask to be referred to a Pain Clinic which could help.
Some of us use TENs Machines (Lloyds Pharmacy on line) you can get them by internet, sometimes they have offers of them. You will get all the information about them on line.

Heat and cold compress pads can help too. It will help keep inflammation down. If you ask the Helpline for information aswell, they could help you a lot and answer questions for you. You will get there and hopefully will soon be comfortable. Joy

valval

hi yes i think the weather has a lot to do with the amount of pain do not know if it because u tense up when cold or a pressure thing. but walking in the snow caused a lot of pain was awake most of the night with the pain lol. no one can understand just how much arther can affect your life and it gets to all of us from time to time so u r not on your own we do understand and do not feel u r moaning because sharing does help knowing u r not on your own also helps and others will read it even if they do not post and will be helped by the replys . so off to doc get some better pain meds if u do not tell them how bad your life affected they will not know so tell them do not say u r ok as we all tend to do good luck

elnafinn

Hi Mickey

I am so sorry to hear that you are feeling well below par at this time. It can be a very depressing time of year for many. We are having extreme weather conditions to cope with too. Looks pretty until you have to venture out in it :roll: Cold can and does aggravate aches and pains, more so in some peeps than others.

I hope that when you are at work you get up every so often for a break, which one should do anyway. It is always an added worry when working and knowing that if you take time off it will be well noted. Stress does not help us at all with our arthritis. Too much stress is not good for anyone, come to that.

Are you due to see your rheumy in the near future so you can discuss how you are at this time or perhaps make an appointment with your gp and have a chat with him/her especially if they are supportive.

In the meantime, keep calling in on here. It does help even if you do not have any specific questions, it is knowing that others in similar circumstances understand and try to support and cheer you up.

Chin up, as my aunt used to say, put a note up in the kitchen, saying "it will pass".

Luv
Elna x

frogmorton

Hi Mickey
I know you probably look fine but we understand hwo you feel and you are definitely NOT alone because we are all here
Not sure what to say about your meds. Cp-cos do that to me too (and yes cause constipation as did tramadol for me???) tramadol also made me so spaced out I was sick the next day too!!! :shock: But I am a wimp! I took them before when I had my back surgery all the time with no probs. I think you need to build up a tolerance to them (either) are you on any anti-infl;ams?? they dont space me out as much and do reduce inflamation and pain.
Elna is right about seeing the rheumy or if not GP then you can talk about med options.
This sounds like a flare and you need somthing strong to get you through it and maybe just maybe reluctantly some time off work.
I do wish you all the best and hope you can get to change your meds soon and feel better.
Love
Toni x

page35

Hiya Mickey
all have given you good advice, i just wanted to add there are quite afew of us that are young-ish with RA im 34 now but mine started at 32 and i know there are lots younger than me with it, so please dont feel alone.
all the best
sharon x

mmarshall

Hi Mickey
I also have RA and I am on MTX, Sulpha and Lodine.
I also have pain in my right arm and I have had it since last summer.
I got 3 Steriod injections and a ultra sound scan to see what was causing the problems.
The scan showed inflamation on the top of my shoulder but the sterioid injections did not help.
I had to stay off work for 10 weeks because the pain was so bad, it started at the top of my arm and eventually it was right down to my fingertips.
I was also given co_codamol 30/500 but they did not help with the pain and I know what you talking about when you said they make you feel spaced out.
I have been going to Physio since last September and the Physio said that when you have pain for a long time in the same joint then it can cause nerve end damage and she spoke with the Rheumy and I started on Amitripiline and I take 20mg at night and it has really helped with the pain and it also helps you sleep.
I am still attending Physio and I do still get some pain in my arm and also I still have some movement problems with this arm.
I think you should speak to your GP and Rheumy and tell them how much pain you are in. I know that you may not have the same problem as me but I know how bad this pain can get.
Mary

salamander

hi Mickey, my problems started with 'arm pain' which I discovered was referred from the shoulder. I had one (apparently diagnostic) steroid injection that didn't help and some weeks later, when in hospital had another one done under ultrasound which has lasted about 4 months and is only just beginning to come back. See if you can get a referral for an ultrasound on your shoulder and arm. That should diagnose the problem. I was told it would take up to 18 months to go on its own accord (was a 'frozen' shoulder) but they can speed that up a lot.
I know how incapacitating it can be as couldn't use it at all.

Your problem may well be different but you do need a proper diagnosis. Also, I'm afraid that for me, even Tramadol didn't help, not at all. The only thing that did it was the steroid injection. I didn't sleep very well as every time I moved I woke up with the pain.

Good luck
Sally

ritwren

Hi Mickey, sorry to hear of your diagnosis but happy you've found this forum. I've found folk to be very understanding and supportive.
With regard to your pain, I agree with all the good advice you've already been given and suggest you do go back and see your GP. He/She may be able to do something to help. Tramadol comes in a slow release formula which I take and the side effects are much less than taking tablets every 4-6hours, you only need to take them twice a day and there are different strengths. I don't think you've mentioned if you are on any anti inflammatories? it may well be that you are having a flare up now but in any case anti inflammatories may well be a good addition to your meds, definately worth discussing with your GP. I take mine when I'm having a bad time but usually only for a week or so at a time, you will need something to protect your stomach if you take them.
I do hope you get something to help soon, let us know how you get on.
bye for now
rita

janey124

Hi Mickey,

ive just joined the forum now, im a 31 yr old with psoriatic arthritis for the past 8 years, and am going thro a bad flare up at the moment, but thank goodness there is light at the end and have been back to work as a midwife for the past 4 wks.. im on the same meds as u including methotrexate injections and arcoxia anti-flammatory tablets.... i got a once off depomedrone steroid injection and the affected joints injected...

i find a tens machine great, altho it has to be on for at least an hour before start to get some relief.. alternated hot and cold compresses and used lidocaine patches which give some relief.. i also have adapted to he diet according to jan de vires against my consultants dismay, lol, but only the diet nothing herbal that would interfere with the meds im on, and have noticed a great difference, in the past 3 months...

i know it is daunting and it is normal to feel down, esp as u look fine on the outside and people dont feel the pain u feel on the inside, but it would be good as the guys have suggested to speak with rheumatologist/gp or find out if there are any nurse specialists in ur area, (thats who helped me out), and hopefully they can help u feel better again.

hope some of this helps
janey x

mickey2009

Thank you all for your advice and understanding, I now know where to come when feeliing alone.

I have made an appointment to see my GP so will be off to that in about an hour.

I've not come across the TENS machine before but have now looked this up on Lloyds Pharmacy site, there seems to be a standard, dual channel and heated one so not sure which to go for! Can anyone recommend which one to go for?

I saw my rheumy nurse and doctor quite often in the first 4 months but haven't seen or heard from either since last August - is this normal?

I did have an ultrasound on my hands and wrists last August but this came back as fine but at that time I wasn't in pain and had just come back off a 2 week break so arm was quite relaxed!

I am not taking anti-inflammatories as I was told that these could cause problems after taking them long term. I used to always take these prior to the diagnosis last year. Can they be taken with sulphasaline and co-cods?

I have regular blood tests (every 3 months) but this is done at my local GP surgery - I assume someone will call me if any of these are abnormal, I do keep a record but unsure of the levels each one should be?

I feel less alone now but still on a low but "it will pass" just have to be patient!

Thank you

Mickey

mickey2009

PS - sorry all, i should have said I'm a gal - had the nickname of Mickey since being a kid

valval

mickey2009 wrote:

PS - sorry all, i should have said I'm a gal - had the nickname of Mickey since being a kid

hi glad that sorted never sure who u talking to on here lol part of the fun u can say what u want and no one knows who u r so will not come back to bite u lol . but to be seriouse welcome hope doc app. went well good luck stay in touch

mickey2009

I feel a little less fed up now after talking with the doctor.

He had a letter on file from my rheumy doc and its recommended that i take anti inflammatories (ones apparently for arther), this should make a difference in 48 hours but if no better within a week to go back and see him.

Only problem I now have, put prescription into the chemist but because of the dosage level of the antis they have to order it in, this might be after 4 today or tomorrow morning.

He still wants me to take the co-cods and keep with my current level of sulph for now.

Thanks again to everyone who has helped me with this - although still in pain at the minute, I feel less fed up and alone

frogmorton

Hi Mickey
(girl!)
well done for going to the docs. Glad you will have some more help soon. I hope you do feel less alone and are reassured by us all here. We will always be around to support you.
Keep talking
Love
Toni xx

ritwren

Hi Mickey, I'm glad to hear you've seen the Dr and hopefully now you'll have gotten your anti inflammatories and they'll be kicking in. I only take them for a few days or up to a week at a time when I take them, Celebrex but they do kick in right and quickly. Hope you're feeling a little stronger, and are browsing around here with the rest of us.
good luck again
rita

woodbon

Hello, Micky Been reading your story and I'm glad you've been to the docs. Blooming Chemists! Mine tried to kill me, I take 2 strengths of anti-depressant, to make up the dose and the chemist gave me 2 packets wrongly labelled with the high dosage tablets in. I could have taken an overdose. Hello, was that a pink elephant flying by, no me in the mirror. .

Hope you feel better soon, love Sue

jofallowfield

mickey2009 wrote:

Thank you all for your advice and understanding, I now know where to come when feeliing alone.

I have made an appointment to see my GP so will be off to that in about an hour.

I've not come across the TENS machine before but have now looked this up on Lloyds Pharmacy site, there seems to be a standard, dual channel and heated one so not sure which to go for! Can anyone recommend which one to go for?

I saw my rheumy nurse and doctor quite often in the first 4 months but haven't seen or heard from either since last August - is this normal?

I did have an ultrasound on my hands and wrists last August but this came back as fine but at that time I wasn't in pain and had just come back off a 2 week break so arm was quite relaxed!

I am not taking anti-inflammatories as I was told that these could cause problems after taking them long term. I used to always take these prior to the diagnosis last year. Can they be taken with sulphasaline and co-cods?

I have regular blood tests (every 3 months) but this is done at my local GP surgery - I assume someone will call me if any of these are abnormal, I do keep a record but unsure of the levels each one should be?

I feel less alone now but still on a low but "it will pass" just have to be patient!

Thank you

Mickey

Hope you are feeling less alone, I just joined this forum and it has already made me feel like I have friends who understand which is so good.I have lots of friends but ones who understand are rare.

Some of my questions and worries have been answered so I hope you are feeling a bit less alone.Hard to sort the right pain relief out just keep trying and asking , good luck xx