Big Flare!!! | Arthritis Information

Well, I worked out a few days ago why I have been depressed recently…my RA has flared in the last three weeks and I have been in denial.

Couldn’t admit it until I went to the GP and then realised what had been going on. I have flared…big.

And after nearly three years of agony and then the Rituxan working really well, after waiting 9 weeks for it to kick in, and then having five weeks where I had energy and very little pain… was just so disappointed, sad and angry.

I’ve plunged into depression deeply. Many, many thoughts rush through my brain when this happens, none of them probably really rational but they are very real to me, regardless. Is this my fault? Why do I keep failing medications? Why can’t my RA be controlled and managed? Even…I am failing my RD and GP…letting them down, as I just can’t get better. And then…I just can’t spend another year bedridden. What am I doing wrong here? Why can’t I fix this? When am I going to get better? THIS IS JUST NOT FAIR!!!

On and on the thoughts and questions rush…I question myself, my RA, my doctors, everything I am doing, everything I am not…searching, looking, demanding answers from somewhere as to why this rotten disease is winning and I cannot seem to beat it when others can.

I feel despairing, sad and so, so ANGRY!

And that is what I have realised in the last day or so…even three years after dx…I am still incredibly angry that this has happened to me. That life as I wanted it, hasn’t happened. That RA has spoiled, changed and rearranged my life when I have not wanted it too without asking permission, without politely mentioning even that it was about to arrive and take over. I am angry. So angry I think I obviously need to do some more processing of that anger. I have worked on it in the past but there is more there. I am not yet at peace with the rage I feel in anyway. I am mad. And flare just brings up how mad I still am. Flaring reminds me that it is all still there…the loss, the anger, the sadness, the disappointment. I flare physically and all this emotional grief and loss rises to the surface again. I think I have done it but another layer needs to be felt, to be acknowledged, to be accepted.

Then this week, my doctors have been consulting pain specialists because they simple no longer know how to control my pain. I am on a 100mg Fentynal patch and 4 x 5mg oxycodone per day and my pain is still not controlled. That is one hell of a lot of narcotics.

The pain specialist, unfortunately very little help, just about everything she suggested we had done or tried. Then she suggested that being on too much narcotic can make you hypersensitive to pain? Is this what’s happening? Am I on too much?

Unfortunately the only time in the last few days when I have felt any relief is when I have taken the oxycodone, had a sleep and have woken up in less pain and more energy for at least a few hours, so the oxycodone, the pain specialist thinks is too much and I shouldn’t be taking seems to be the only thing that is working and giving me relief.

So should I go off it? This is just so confusing. I was wondering what others experiences of this situation have been. Has anyone ever been on too much and been hypersensitive to pain, then reduced your narcotic and improved??? If any of you have any experience of this, I would appreciate your sharing.

I have another round of Rituxan in early March. The ‘powers that be’ won’t allow me to have it before that. And attempting to think outside the square I asked my RD if I could go back on Plaquenil and/or Sulpha. Apart from the small period recently when I could function from the Rituxan, the only other time in the past three years when I could function was the first six months of 2006 when I was on a combo of Plaquenil, Sulpha and MTX. No, I wasn’t RA free but I could function back then. I could manage my house, take care of my daughter and do some social things. So I asked if I could go back on it and my RD consented to me going back on Plaquenil along with my Rituxan and MTX. The Plaq will, of course, take about three months to kick in but I just think it is worth a try.

I am not aiming here for perfection, I don’t expect that. I just want to function. House, daughter and a little bit of social life. I just cannot face another year basically bedridden as I was last year. Neve needs me to be a functioning Mummy. I need to be a functioning person. Am I asking too much here?

My GP says the depression I am feeling is from being in so much pain…all the time. I tend to agree with her, because when I am not in pain like this, I am not depressed.

Also in the past few weeks I have had very little appetite. Over the years I have experienced this in patches. Again my doctor thinks it’s to do with the pain levels. Has anyone else experienced little or no appetite?

In all of this, I feel pretty much completely lost as you would imagine. I am trying to pick my way through, moment by moment, bit by bit, but it isn’t easy. I don’t feel like I have a clear path ahead like I often have in the past.

Oh, and when I get very depressed, I withdraw and become very insular so although I had Neve home and was busy with her and couldn’t be online then after that I was really, really down because the flare had started and then I just couldn’t get myself back on the board because of that. How have others here experienced the depression that comes with this disease? Do many of you feel as discouraged as I do?

Sorry this post is so long but I have a lot of stuff I needed to share and lot’s of questions I needed to ask. Thank you.

hi Cords, well well well, no luck lasts too long for you or me, while reading your very well written post, I found myself thinking of my own chronic pain story and it is very similar to yours. I am so sorry that you are back at this crossroads again. I can only say that I understand and maybe its happened too much to me because I am pretty much resigned to the fact that all I can hope for now is pain relief as I cannot tolerate any biologics or any of the DMARDS. I have been to the pain clinic and did not find it helped me too much, most of it I already knew but I did try to look and listen to it all with renewed vigour. My GP is about to send me to a private anaesthetist who is registered as a pain specialist at Greenslopes hospital. I have the private hospital insurance so I figured why not, nothing else is working!

I am taking 12.5mg of MTX weekly and I have had to switch to injections as I cannot tolerate the tabs, 9mg of pred, 5 x 5mg Endone per day, 50mg tramal tabs in between, injections of tramal 100mg when in excruciating pain, panadol 4-6 hrly, and all this when I do nothing physically, I am so debilitated with fatigue, it hurts to even think. So honey, I know where you are coming from, I just wish we lived closer so maybe we could help each other out a bit and share some funny stories, and on our good days, (yeah right), go out and create merry hell! Hang on in there and I am only a phone call away, have you thought anymore about the housing people and asking for an urgent transfer due to mobility and health issues, I really think you should Cords, my life has changed for the better since I moved closer to all amenities, and you need to be closer too, chin up and remember, this disease didn't ask our permission to wreck our lives as we knew them but we can give it one good kick up the butt every now and again to let it know whos boss!!!!! Love your pal, Janie.

NB added by editing by me! I wanted to also say that I am not overly religious but I do have my faith and rely on that heavily when I get majorly depressed or ill. XX
janiefx2008-02-02 08:29:46Your feelings are justified and your questions as to why are a mystery for sure.
Prayers going up for you that you get some relief.

Try to keep your faith-and know IT WILL GET BETTER
Hiya Cordy. I can relate to how you are feeling so much. The denial and the feeling of depression and hopelessness and wondering if there is a life outside of all the misery. Well hang in there, I was definetly where you are. I had been housebound and virtually bedridden for a long time, I didnt want to talk to anyone and became so reclusive. My meds didnt want to work anymore so why bother ! BUT...........life has got much better. It just happened overnight. The ra didnt necessarily get lots better but my state of mind did, which in itself improved everything. My mind accepted that I had an illness but I still had my life. I had to push myself to get the extra mile everyday but I looked at that as an accomplishment. The more I did the more I liked myself again, then my humira kicked in and that helped too, when the Humira failed me, i refused to get down again and accepted my enbrel with enthusiasm. I had a flare last week but after my enbrel on friday I have been wonderful again. If this fails me then theres always hope. You will get through it, its a trial to make you stronger
Oh, Cordy, I am so sorry to hear that things have turned this way again. All of your feelings are very understandable, and ones I have had myself from time to time. But this is not your fault. You are in my thoughts and prayers.
As for the narcotics causing hypersensitivity, I have heard of that theory, but have no basis for knowing whether it's true. If the oxy is the only relief you're getting, I think I'd be hesitant too to lower that. Is the Fentanyl actually helping? Maybe that would be the one to reduce or lose.

Asking to be a functioning person, especially being a single mum, is certainly not asking too much. You deserve to feel better than you do. Try to take it one day at a time and not let it get you too down, because the depression can make it feel even worse. I don't remember now, but have you tried any anti-depressants? Or natural supplements? Are you seeing a counsellor or could you?

As far as no appetite, I find that my worst pain bouts either drive me to overeat, or I have no appetite at all. I don't know what's different between those times, but it definitely affects my eating patterns.

I have suffered from depression long before I had my other diseases, so they have only made it worse. I am very discouraged right now...the Rituxan in November hasn't done anything and I'm still in pain, I am home on Short Term Disability since the last week of November and will not go back until March 1st or later, I am on my 4th course of antibiotics for a 7-week sinus infection that is preventing me from getting a lumbar epidural, my aquatic physical therapy on Tuesday sent me into a 3-day pain spiral, etc. I'd say that's a lot to be discouraged about! And that's without the pressure of being a single mum. I think it's very natural to be depressed and discouraged, but we must do what we can to manage that. I see a therapist every other week and although I'm not able to take any of the anti-depressants, I take SAM-e supplements to help (although I must mention there is some evidence they can interfere with the effectiveness of mtx, for anyone interested). I also am trying to keep to a schedule, keep myself busy, get myself out of the house regularly, etc. But it isn't easy.

I know your tendency is to withdraw, so I would suggest you make it your goal not to do that. Force yourself to check in here each day, even if you don't do much posting or answering. If for no other reason, we need you around!

And just remember, tomorrow is another day. Our bodies change, our emotions change, and new medical options will be available in the future. Try to nuture that little bit of hope, or at least to feel neutral about it (it might get better, it might not, you'll just have to wait and see).

Hang in there!!
Wow. That really sucks big-time Cordelia. I've been thinking about you lately, wondering how you've been. I wish there was something I could do to help! I'm so sorry to hear you're struggling again under the weight of this terribly frustrating and debillitating disease. I'm one of the fortunate ones, the medications are working pretty well, but every two weeks on the 2 - 3 days before my Humira injection I experience at least some level of the pain and discomfort you describe so I can imagine what it must be like to deal with that most of the time instead of some of the time...a huge difference. It can certainly lead to anger and depression, and yes, it is unfair, especially with a small child to love and care for. I experienced many of those same emotions when my son was suffering terribly from a chronic illness that started when he was 13. I vividly remember walking out of the hospital one day and sitting in my car ranting and raving, the anger pouring out...I couldn't see to drive so I just sat there for a while. For me the things that helped the most was to find ways to express my anger...writing primarily, and to find a group of friends who cared about me that I could share the darkest details of my experience and know they wouldn't run away and hide! There was absolutely nothing I could do to remove the source of his pain...but wait and let time create change...hopefully for the better. (In fact, he is doing remarkably well now after 8 long years of struggling against enormous odds.) I hope you can find some close relationships that can provide the kind of support you need.

I will pray for you,

Alan
Cordelia...I've also been a medication failure and am now on rituxan. The first set of infusions lasted about 2 months for me. So far the second set has lasted almost 4..maybe, hopefully it will be the same with you.

Are you receiving any treatment at all for your depression? Sounds like you might be in a viscious cycle where the pain is causing depression and the deepening depression may be exacerbating your pain. Many anti depression medicines can also help with pain. Also if you haven't seen a counselor you might find one helpful. Having an outlet for your anger and frustration may help your overall mental health

feel better soon

CordyCordy, I am so sorry for your current problems, I was thinking you weren't online because you were better and enjoying life with your DD.

When I was bedridden a couple years ago, it was horrible to think about how this might be the rest of my life. I spent alot of lonely hours in bed crying, but I was fortunate that the Remicade finally started working. I can't imagine carrying that load with a young daughter, our oldest DD was home from college for a week, brought a tv in the bedroom and watched movies in bed with me, but it was really hard on her to leave. There were days when I really thought if it weren't for my family and what it would do to them I'd end it. Some of us will get dealt a worse hand than others, it has nothing to do with what you did or didn't do. I lost 10lbs lying in bed for 3 months. Ate a banana a day. My DH would get it started and put it on the bedside table with a bottle of water, I took one bite with the pills I took every 4 hours and then wrapped it back up in it's handy wrapper until 4 hours later. I'd eaten alot if I got it finished by the next morning.

It sounds like your dr's are very understanding, I'd be very sure they knew how intolerable this all is and how much you need relief, not just for you, but for Neve. I was lucky, when our girls were little, I never had any flares, just a slow downhill slide, it was easy to just grin and bear it. Again, I am so sorry and hope you find something that helps.

sorry you are having such a rough time, Cordy. There will be brighter and better days...you have to believe that. RA is a really tough disease to live with and the ups and downs are all part of dealing with it. I hope the Plaquenil being added back will help. I flared big time when a former rheumatologist took me off this med. He also took me off MTX...but a new doctor put me back on effective meds which helped a great deal. Combo meds do seem to do the trick. I hope today and tomorrow and the days that follow show improvement in ways that you can feel and see.

Take care! So sorry you are going through this....
Goodness, Cordy, no wonder you're depressed. Constant pain is exhausting and demoralizing. The only comment I can add to the others here is, I wish so much that you and others would not refer to yourselves as "failing" this or that med or "failing" the doctor. I see it so often in various posts. It's a terribly negative way to think about it. Why do you have to be so hard on yourselves? YOU DID NOT FAIL THE DRUG, THE DRUG FAILED YOU. And if you don't get the result hoped for, you have not failed the doctor. I understand what you're saying. I want to be a "good" patient too, who takes her meds and gets all better. And I felt bad at first when I had to go back to the RD and tell him his drugs were no longer working. But I know it's not my fault. And it's not yours either. You are not "doing" any of this. The disease is doing it's nasty thing. Please don't think of yourself or define yourself in terms of the disease. We all are so much more than that. Thinking that you are a failure in any way is going to make you that much more depressed. Don't do that to yourself, please. Give yourself a fighting chance. Jesse.... Thank you so much all of you. Each one of you has said things that help. Things I write down and hang onto in the coming days.

I am with a brilliant counselor. We are working continuously on what I am experiencing but it takes time. She is a single parent of a five year old also so she relates in lots of ways to my experience and knows personally how hard being a single parent is without a chronic disease on top of it. She has also helped with a lot of practical things regarding the RA. She helped me fill my disability forms out, things like that so that is already in place for me.

As for an anti depressant, I am already on a good one and it took six different tablets to get one that worked so I am reluctant to change it. And I do believe that depression I am experiencing now is purely about the pain levels I am enduring. When pain gnaws away at you continually, it is depressing.

Buckeye, you have made me feel 'normal', lol, thank you. The stories you hear with Rituxan is that it is like getting your life back and when that doesn't happen that way for you...it is very disappointing. And Rituxan infusions are big to go through - mentally and physically and then you have to do this big wait afterwards and when it doesn't work the way you'd hoped...it's really disappointing but I think my experience and Buckeye's is common too. I am certainly very willing to go another round of it and see what happens then but I also thought bringing Plaquenil and maybe sulpha back in, couldn't hurt. At least they did do something last time.

Jesse, yes, you are completely correct about looking at it as my failure. Rationally, I know the drugs failed me and that I am not the failure but certainly that is how I am feeling at the moment but I also acknowledge what you said and recognise that I need to change how I am thinking about that. Myself and my GP and RD are all working so hard to get some result for me and it is so frustrating when nothing works and we are all trying so hard. Both of them are fabulous...I can't fault them...they both listen to me and respect that I know things that they don't here so they are open to my suggestions, I couldn't ask for more.

I so appreciate you all being here and supporting me. The support from all of you is invaluable and I don't know what I would do without it.

Aww cordy, I'm sorry I didn't respond sooner.

Thanks Katie, Kelstev for your support and caring. SnowOwl you said some really helpful things, thank you. I appreciate all your responses...they all help me to feel better and keep on hanging in here. Oh Oh! I almost forgot, some wise words that some on here told Lizzie...

YOU did not fail the medicine. The MEDICINE failed YOU. *hugs*
(((((((((((((((((cordelia))))))))))))))))))))))
I don't know you well enough to call you cordy yet, but i can give hugs! lol

I totally understand and get your frustration!! I can't imagine having a young un to take care of... but think of it also this way, you're instilling some self reliance in her :)

I'm soo happy you're in therapy, i was going to recommend it.... its rough, i feel exactly the same way.... its weird, but the more i just accept it and go w/ it... the easier it is..

I've bipolar all my life, even as a kid and finally w/ a lot of therapy , have gotten a lot of tools w/ coping and I also use them w/ this,.. still its frustrating.. but hey i.. we can type..

yay!!!

and this really works.. everynight, say 5 things you're grateful.. The Gratitute List, really works.. (and yes, I'm a venter too, lol.. but also an optomist.. on certain days :P

I'm a gemini, .. dual nature, lol

feel free to vent..
Cordy love, I'm so sorry you're in so much pain again. Your respite didn't last near long enough. I do pray something will help you again soon...nobody should have to endure such pain in this day and age. Please try to stay optimistic, that something is going to help soon. We miss you when you're not here. Ta, Katiekins. I do know that it is not me who is failing here logically and rationally but it just feels to frustrating that the drugs aren't doing what I had hoped. And to have felt so well with the Rituxan kick in, better than I have for a decade probably and then to flare was just downright cruel and nasty. I have needed to grieve again, much loss and grieving comes with RA as a package deal it seems.

"And offer today is one great chronic disease, Rheumatoid Arthritis. With this package you pain, fatigue and a wonderful dose of swelling. As an extra bonus, just today, for the first ten callers only, we are throwing in a wonderful bonus!!! Grief, loss and depression will be added just for your enjoyment!"

Sorry, my sense of humour just couldn't help itself. Thanks Moana, you always say something so loving. I am trying to hang in there with being optimistic. Doing better since I have vented. And I have decided to make a goal to stay connected and not isolate myself. I am better when I am connected. I had that problem with my first Rhuemy too. I was in my first episode with a 12 hr. pain cycle that started at 11 PM- it felt like all my limbs were being sawed off at the joints and my feet and ankles felt like they were broken when I had to walk. My doctor was giving me crap that people get after having a dental procedure. I told her we have to talk pain management here- I NEED NARCOTICS! She got very angry with me and said you do not treat RA with narcotics. I said I realize you don't treat the disease with narcotics but there are many diseases that pain goes hand and hand with and people are given medicines to make them comfortable. I told her she was very cruel.

She let me suffer like that until I didn't sleep for 2 weeks straight because of the pain and got so weak I could no longer even sit up unassisted. My husband blew up at her and said he would like her to come to our house at 4 AM and see how I was suffering. She finally prescribed oxycontin and my GP a sleeping pill.

After my body got some relief and rest- the cycle went down to 4 hrs.

I took her up on her snide remark about getting a 2nd opinion anytime I wanted- ended up changing doctors and was off all prescription pain meds 3 weeks later.

Hope you get something that helps give you relief.
`~`~`~gentle hugs and best wishes~`~`~` Cordy, I hope today is better than yesterday. Much love to ya. I am still feeling rotten physically...pain is out of control and I am so, so fatigued but mentally and emotionally I think I am doing a little better. I am allowing myself to acknowledge that I am disappointed and angry and am letting myself feel it rather than containing those emotions and not processing them. This is helping a lot in my regaining some emotional and mental stability.

With all the narcotics I am on...they are just not getting on top of it yet but they probably will...it just takes some time to reign it back in after the pain has got out of control.

One thing this has done is start to get me thinking seriously about other alternative things that I could do to see if they help...there are things I can do - everything from trying acupuncture to actually going to the Tai Chi for Arthritis class that is held locally, to trying to get swimming more (I have been doing some recently), to attempting to walk...just to the clothesline and back a couple of times a day, even with it hurting like hell and I am barely able to walk. I suppose this has opened my mind to actually trying a whole lot of other stuff as well as the drugs and see whether it helps or not.

So with all that, although physically I still feel like utter garbage...I am starting to feel less powerless in all this by recognising that I do have options and other things I can try. Not feeling as powerless really helps so I am definitely not feeling as depressed because depression often comes from feeling powerless and I am not anymore. This is a good step.

Thanks for checking in on me. Cordelia2008-02-03 16:59:45Well I'm glad to hear you moving forward, slow as it may be! *hugs*

Just please don't forget that we are here for you, any time! Dump whatever you need to here!!!
I won't forget, promise. I yesterday I made a pact with myself that I will stay connected in here everyday and not withdraw. Even if I can't post much, just being connected in helps one stay sane through the pain and fatigue. Innerglow suggested that I made a goal to keep connected in and it was a good suggestion. I had a light bulb moment when she said it and right then decided that it was very important for me to do so.

If I need to vent, you bunch will absolutely hear about it straight away. Not much that I can add that hasn't been said, but to say it's good to see that you are seeing things a little differently now.
I know taking pictures and being able to pull one off can be a great boost to my morale.
It can be hard sometimes just to give ones self a good boot up the backside to just get out there and do it, but I am always great full for that boot, be it from myself or from another.

When I see scenes like below, it always brings a smile to my face, even if in discomfort.

Thank you Bodak! It is beautiful. Oh, my dear Cordy! I am so very sorry you are having to go through all the pain and depression that you are suffering. I'm glad you are working with a counselor. Sometimes a caring voice can help enormously.
You asked about appetite, and mine has been terrible for the past couple of years. Pain and depression do that to me, too. My Sweetie cooks for me and I try to eat because he tries so hard to make things that will appeal to me. Just be sure to try to at least, eat enough so your blood sugar doesn't get messed up.

It has to be so hard to go back to feeling so bad after having a month of feeling pretty good. But, Sweetie, you know we are all here for you. And you can pm me or e-mail any time you need me. I know how easy it is to become depressed from being in constant pain.

I used fentanyl patches for a while. My pain doc had me on both 100mg and 50mg at the same time. Even that didn't control my pain after a while. The one I've done best on is Methadone, with either morphine or dilaudid for breakthrough pain. My pain doc told me that, according to a study, methadone seems to work better for women because of a certain hormone we have. Perhaps you could ask your doctor about that.

But even the methadone can't control it sometimes. But at least it takes the edge off a little. Currently, I am having a pain control problem that none of my magic meds seem to help. I think sometimes the pain is just too controlling to allow anything in to help. But I know you will come through. Just remember, everyone needs help sometimes. Please come to us when you need us.

My thoughts and prayers are with you, dear Cordy.

Much love, Nini
Beautiful photo, Stephen. I would expect nothing less from you though, you take wonderful photos...between you and Alan we are well kept in gorgeous photographic material.
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