Just venting about me:( I'm so frustrated. .

[linda55]

..I was diagnosed in February. Only one in family. .but I have the high scale mark on the blood test I'm always flaring..don't know wat to do about keeping my heart strong..still being exam for my knee situation .won't know more until 2 weeks..I have been pretty much layed up in bed..before i was walking everywhere..I cant even shop as silly as that may seem..I'm so depressed. ..it hurts my knees to set on my own counch ..I cant enjoy my house or cooking..I miss it..I misd my life..I had to get devices for bathroom situations n I use a walker. .that I can barely use with rheumatoid. .what can I do?? So frustrating n my body rejected methotrexate. ..so tht was my 3rd week into it..now go for another blood work have ulcers on my tongue from it ..so he stopped it n up my dose of folic to 10mg i also have bruising...but I welcome suggestions with exercising. .ty..and with medications for pain n stopping my progression of rheumatoid. ..ty for having this site it help me cope a little more..

[Ali_H]

Hi Linda,

I strongly suggest that you call the NRAS helpline: on 0800 298 7650 (between 9.30-4.30 Mon-Fri) it will help you feel less isolated and help you to start making sense of what's happening. I say this because your postings keep coming back to the phrase 'I'm the only one' and to feel that alone and dealing with a chronic illness is not just hard it's (excuse my language) bloody hard.

I will repeat myself and say again "It will get better"

So right now you are stuck a 'prisoner' in your own bed/ house - a prisoner in your own life even - and you physically can't get out and about - and there is precious little you an do about it other than sink into a black hole?

not necessarily true because we have the ultimate freedom to choose our attitude towards things/events/other people -

Right now I get the impression that you hate venomously your illness and its effects on your daily life - what would happen if you replaced some of that hate with curiosity? What would happen if you decided to think of this period in your life as 'being on the crappiest holiday ever' -you've finally got a break from what was your daily routines, efforts and grinds but the flight was bumpy, scary and downright awful. The hotel is only partially built and the weather is lousy and you can't get an early flight back -what are you going to do? Dark humour might help, instead of swimming in the nonexistent luxury pool taking that sketchbook and pencil to the local cafe, people watching and drawing might help. Borrowing unusual/different reading books from those around you and snuggling under for 24hours might help. Spa dating it in your hotel room with scented candles, soft oils to rub into tired hands etc and hanging out in pjs. whilst snacking on fresh fruits of a different kind to those you usually eat (hey go for crab salad if you like but make it a treat). The choices are only as limited as the traveller's imagination and emotional energy may not be as limited as first thought because hate takes a lot of energy and serves little purpose and in addition puts nothing back in the energy pool.

Now all that rambling on my part may have just irritated and pipped you off - if so I apologise and hope you keep 'talking' frankly on here (just be gentle when telling me that was too wacky please :). )

All the best

Ali

[linda55 in reply to Ali_H]

No..ty for the wisdom of this disease. .I really appreciate it..I will take all you said in a positive outlook..

[oldtimer]

I remember when I was first diagnosed many years ago, having a load of students around me and the registrar demonstrating what a classic case of RA I was. He was asked about the prognosis by one of the students and he said amongst other things that my life expectancy was around the mid fifties! (it WAS many years ago)

I was so angry with the disease that I said to myself "We'll see about that!" and I used my anger to get sorted out, get the best treatment (at the time) and get as fit as I could. I planned and succeeded in changing the type of work that I did so that it was much less physical and I have fought every inch of the way to keep as fit as possible.

I've been lucky too, but I feel that using my anger to battle to get the best possible treatment has succeeded so that I have been able to lead a more or less normal life. It's not what I thought it was going to be, but when does life ever run a smooth path?

I think what I'm saying is harness the anger that you feel against the disease to get yourself into a better place. You are the only one that can do that, but you CAN ask for help. It takes time to find the right treatment but you WILL find it.

[linda55 in reply to oldtimer]

Ty..

[nomoreheels]

Try not to overthink things, don't be so hard on your body not reacting to your meds, it takes patience & an understanding that not everything works for everybody the same way. It's really very early days for you & I know it's difficult to come to terms with how different you feel in a relatively short period of time but beating yourself up as you are really won't help. Many other people have been were you are now & come through the other end & leading relatively normal lives so try to turn that frustration round & concentrate on the fact that this is the worst it will be & you'll start to turn round once you've given the meds have a little more time to work. We're all in the fortunate position of having many different meds nowadays so there are many options out there for your Rheumy to try to help you.

I'm not sure about exercises just now with your inflammation without causing problems so I wouldn't worry too much there. I would suggest swimming to help but I'm not sure that would even be a good idea just now but it's something to think about a little further down the line.

If I may just say that you're not the only one who's felt like this, many have gone through this & come through through that dark fog & believe me it's worth the wait. I know that may not be in the forefront of your mindset now but if you find one thing you can centre your attention on that may help you not to be consumed with the fears you have just now.

Your family will be struggling as well seeing you as you are & feeling helpless to help so try to be a little more buoyant when they're around, that will give you a break from the pit you're in too.

I don't know if you're in the UK but if you are it may help to speak to the NRAS helpline as Ali has also suggested. I'm sure they will be able to help & you won't have been the first they'll have helped who have felt as you do. If you're not UK based I'd have a look on the internet to see what support groups are available where you are.

It will get better believe me.

[linda55 in reply to nomoreheels]

Thank you for your kindness..yes it relatively a new chapter in my life..I just had some goals set and now there been a halt to them. Maybe that's why I'm so upset n mad that this happened to me. I feel so crippling and that was not in my plan. I know I need to be more acceptance but it's just hard I can't be active and when I do I flare and I get exhausted? My nights are terror now..I'm afraid to sleep n when I wake to go to br takes me forever to move without the pain..it's just a evil disease it makes me sick..I appreciate all the responses and believe me I take every word you n others have said to me at heart...I sometimes will double read..just to absorb what I need to do..I'm trying really hard to accept this ..but when my skin is crawling in pain n nothing is settling it I don't know wat I'm suppose to do...

[nomoreheels in reply to linda55]

I understand how it will be so frustrating for your plans but all is not lost, think of it as a hiatus. Once your on your meds they'll start to work & you'll notice you can do more. It's very early days for you & may feel as though you'll not do them but give it a little time & you'll see that if you listen to your body you can do most of what you'd planned, dependant on what your plans were of course! As I said a little patience is required, the meds take a little time to work but much depends on the results of your bloods & how your Rheumy decides to treat you once he sees them. He'll determine what's best for you once he's had sight of them.

If you're not coping with the pain do ask your Rheumy or GP for some help, there's no reason for you to suffer pain. You don't say if you were prescribed anything other than MTX, for example when I was diagnosed I was started on hydroxychloriquine (a different DMARD) but at the same time I was also prescribed a short course of steroids, 2 different types of NSAID & pain relief. If you're not taking anything but folic acid you really need something to help until the whichever DMARD you start once your blood results come back & treatment is continued.

I don't know if you've looked at the NRAS site, it may be helpful for you to understand about the disease & treatments available. There's lots of other useful info there too nras.org.uk.

[allanah]

I think the others are right about talking to nras but also when I was first diagnosed I was very angry like you and I just couldn't accept it that I was sick. I spoke to a counsellor who pointed done home truths to me about how I view the world and it really helped.

The pain tho .. There are things to help until your RA drugs kick in. Can u call your hospital and tell them of ur pain, they may prescribe a steroid and gosh those thing help me. Also what pain meds are you taking? Are you tsking them regularly as per prescription? If I missed a dose I did know about it, if they are not working go to the gp and try others until you get one that does!

Also use hot or cold packs and in the morning take your time to stretch out in bed one bit at a time , and slowly get moving , it can take 40 mins but worth it. Hand your pain meds before the stretching.

It is doable, things won't always be this bad but I found I had to be proactive in my care, taking my pain meds, talking to experts and on here and accessing physio for stretching exercises( there r some on the Nras website you!)

Hope you start to feel a bit more well what I called for me in control rather than " accepting" ! Don't think I ever quite managed that! Thinking of you A x

[medieval-ali]

Stay positive, there are lots of lovely people on here who will listen to you if you need to blow off steam.

We all get angry with the disease and it can be very frustrating when having a flare, I couldn't accept I had it for years, and honestly it is far better to come to terms with it and deal with it, try not to let it grind you down. (I don't think we ever truly accept it, we learn to control it) I now treat my flares to a couple of days of movies and a good book, then try to get myself back together or I will start to feel sorry for myself and end up in a terrible state!

When you can get moving try to keep moving, the more you can move about the less it will hurt and stay in the joints, I tend to treat my body like a 4 x 4... use it or loose it! (a quote from Landrover btw if you don't use all the gears they seize up and you loose them) We all know that this is difficult, but don't let RA get you down! My form of exercise is cycling and it's a tonic, especially when the sun is shining.

If the drugs you are on aren't suitable tell someone there are plenty more to have, I pretty much used up all the options over the years, and then as if by magic one was found that suited me for 10 years, I am now still taking it but have Anti TNF along side.

It will get better, when you work together with the RA team and they find you the right meds you will improve. I am now after 17 years of RA, probably the best and fittest I have been since being diagnosed.

Good luck, keep positive you will get through this!