I was dx with ra last January but had been having symptoms for about a year or two previous, including 5 miscarriages. My blood comes back mostly normal, sed rate a bit up and a few things off slightly but ra is negative.
I started placquenil last January. Tried a few 7 day dose packs of steroids. Added in Alsulfadine and than Imuran, both made me horribly ill. Tried enbrel with limited success. Went on daily steroids in May.
Found a new rheumy the end of June. We decided to go to humira at a weekly dose instead of the enbrel. She wanted me to wait a few weeks though until the enbrel was out of my system.
I started weekly humira shots in August, continued the placquenil and steroids-steroid dose various but typically 7.5mg. Was starting to see some improvement but not enough. Gave up the thought of ever having a child and agreed to the mtx. Been on this cocktail around 8 weeks. It seemed like I had a couple of ok days in there but my hands look like the stay puff marshmallows, they are so swollen, red and hot. My feet are the same way. Everything hurts. I am so damn tired. My eyes are even flaring again and had to start using my steroid eye drops.
I increase my steroids to 30mg back in September for several weeks and was tapering back down but for the last few days I've been doing 10mg but I know I need more I just really can't stand talking anymore. Not only the food cravings but they are making me have suicidal thoughts.
What if these drugs don't work? I absolutely can not go on living in this much pain. I have vicodin for the pain, I try not to take more than 4 a day. I have tried two rounds of physical therapy. I've seen two different rheumys. About the only drug I haven't tried is the remicaide and I just can't see how that would be that much more effective than the enbrel or humira. I'm really getting frustrated and to the point that I really don't care if I wake up in the mornings. I need it to stop hurting.
Please don't give up. You haven't tried all the meds yet, just some major ones. Hopefully, they will find something that helps. In the meantimes, have them send you to a pain specialist where you can at least get some major relief. When the pain gets that bad, toughing it out just doesn't cut it.
I'm got my appointment and waiting. If you find that you can't get in to see one for awhile, the next time that the pain is unbearable, go to the ER. They can probably treat your pain with something significant and raise everyone's attention that this is just not working for you. Be sure that you have someone with you if at all possible so you don't have to drive and to advocate for you.
There are still many things that they can do to help you. Don't give up yet. I am so sorry you hurt and that after all this time that you are no closer to a solution.
Call your doctor and mentions all that you did here, including the suicidal thoughts from the prednisone. Maybe they could put you in the hospital for a few days to get this under control and get you out of this eternal flare.
Thanks Deanna. I have been to the er 4 times this year with ra related pain. Mostly in my chest, the costo gets so bad, I can't breath. They run a few tests, give me a shot or two of diluded and tell me to see the rheumy. I am afraid the er room is going to label me a drug seeker. I have an appt with the rheumy right after the first of the year. The last appt she just says all your numbers look good, keep at it.
When I mentioned the suicidal thoughts the last time, she said don't say things like that because I will have to send you for a phys evaluation before I can treat you any further. Well, get the ra under control and I won't need a phys eval!
Now, I am worried about you. I get the costo. But did they eliminate pericarditis with any kind of heart tests? Costo can mimic pericarditis or a heart attack. When you say you have RA, they might leap to conclusions here. If they didn't do EKGs and other heart tests, how did they conclude it was Costo. I know when mine is Costo because I have no breathing problems and the breast bone actually physically hurts when you touch it. You could also have a blood clot in your lungs. It really takes experts to diagnose this.
I know what you are saying about the ER assuming you are a drug seeker. I hate that attitude. What should be happening after you go to the ER is that your Primary or Rheumy should be seeing you right away, not in a few weeks to get your treatment straightened out. If you have been 4 trips and still nothing is being done, you need to raise some hell. If you have to go back again, demand to be admitted. Of course, I know your insurance and the cost of copays might make this really hard to do. But if you can afford to do it, then demand it. Tell them you want a full heart work up and you need someone to look at your RA to get it under control.
If you are on 30 mg prednisone and your numbers look good, that is not sufficient. I don't think this Rheumy is awake. Get a second opinion, your Primary in on it, ask for a same day appointment, but get somebody's attention.
I still cannot believe what she said to you. That seems irresponsible to me to put someone on a high dose of prednisone, not address the pain issues, then threaten to send them to a physciatrist for expressing concerns over the side effects of the medication.
Who is this doctor? Oh, I just want to beat her up for you. It is not right. You are not being treated right. Demand to be treated like a human being.
No wonder you feel so depressed. No one is giving a damn. Well, I do. So, go back out there and get someone's attention. If you find that you have to go to the ER again, tell them you want to be seen by their Rheumatologist, Cardiologist or something. Do not let them give you the brush off again.
And stay in touch, please, so that we know you are still surviving.
Michele,My numbers have always "looked good" but my body shows different. I cannot believe that the rheumy is going only by the numbers. I would find a pain control clinic in your area. I know what you mean by taking vicodin as I am using 8 every 24hrs while waiting for a cocktail of meds to help.
Hang in there.
[QUOTE=Deanna]You are not the first person to have suicidal thoughts from Prednisone. It doesn't affect me that way, but I don't know the number of people who have said that they feel like a crazy person on it. And, the higher the dosage, the more emotional I do get. This is a direct result of your medication and the lack of pain control. That seems like a very heartless response from your doctor.
Now, I am worried about you. I get the costo. But did they eliminate pericarditis with any kind of heart tests? Costo can mimic pericarditis or a heart attack. When you say you have RA, they might leap to conclusions here. If they didn't do EKGs and other heart tests, how did they conclude it was Costo. I know when mine is Costo because I have no breathing problems and the breast bone actually physically hurts when you touch it. You could also have a blood clot in your lungs. It really takes experts to diagnose this.
I know what you are saying about the ER assuming you are a drug seeker. I hate that attitude. What should be happening after you go to the ER is that your Primary or Rheumy should be seeing you right away, not in a few weeks to get your treatment straightened out. If you have been 4 trips and still nothing is being done, you need to raise some hell. If you have to go back again, demand to be admitted. Of course, I know your insurance and the cost of copays might make this really hard to do. But if you can afford to do it, then demand it. Tell them you want a full heart work up and you need someone to look at your RA to get it under control.
If you are on 30 mg prednisone and your numbers look good, that is not sufficient. I don't think this Rheumy is awake. Get a second opinion, your Primary in on it, ask for a same day appointment, but get somebody's attention.
I still cannot believe what she said to you. That seems irresponsible to me to put someone on a high dose of prednisone, not address the pain issues, then threaten to send them to a physciatrist for expressing concerns over the side effects of the medication.
Who is this doctor? Oh, I just want to beat her up for you. It is not right. You are not being treated right. Demand to be treated like a human being.
No wonder you feel so depressed. No one is giving a damn. Well, I do. So, go back out there and get someone's attention. If you find that you have to go to the ER again, tell them you want to be seen by their Rheumatologist, Cardiologist or something. Do not let them give you the brush off again.
And stay in touch, please, so that we know you are still surviving.
[/QUOTE]Having technical difficulties, sorry!
They have done several cardiac work-ups and supposedly all is good there. The first er trip was last February. I was expecting a few girlfriends to come over for lunch and we were going to make jewelry (i bead) but about 20 minutes before they were to arrive, I got really short of breath, felt dizzy, hot and sweaty, thought it was a panic attack but it felt different. Hubby was kind enough to go to the grocery store for me but had his ipod on so didn't hear me call. Called my girlfriend who came over asap and took me to the er. They did chest e-rays and all the cardio stuff and said it was from the swelling between my ribs not allowing me to breath properly. He gave me 10 darvocet (might as well have been candy) and sent me off.
Second time was about 8 weeks later, threw up a ton of blood, passed out and hit my head on the sink counter. Hubby called ambulance. Said I had a bleeding ulcer from all the nsaids and sent me home.
I switched rheumys after that. In May I got the same shortness of breath, was dizzy, pulse was racing, I looked awful. Went to my primary doc and she sent me to er to be checked for a pulmonary embolism. All came back ok. Told it was "just" pain from the ra. I did actually get a few percocet and a couple of pain shots that time.
This fall, back to er again. The pain was so bad, my heart was racing but my blood pressure was low. Had awful stomach pains and bloody diarrhea. Had abdominal cat scan and x-rays. They thought maybe crohns but saw a crohns specialist and he said he didn't think so, so back to rheumy.
I do like my current rheumy, she is usually nice when I see her but to get her on the phone is really difficult. She isn't even positive I have ra, thinks it might be a reactive arthritis that doesn't respond to antibiotics.
I still have diarrhea like 5-15 times day. They just keep giving me lomotil to slow it down but no reason has been found. I have started getting awful migraines this past summer. Now, recurrent yeast infections.
I think my only option at this point is to try and go to one of the teaching hospital like university of Michigan. I start to doubt myself though because my blood work comes out good. Even if I was depressed enough to be making myself physical ill though, I don't see how I could make my hands and feet swell to over twice their size. I just feel overwhelmed. On one hand, I feel like I've got to have some deadly disease to feel so rotten all the time for so long but then I feel like its in my head because all my test results are ok. Although I do have bone changes in my x-rays. I even have a dislocated disc in the right side of my jaw that I have had a special bite splint made for and have been seeing yet another specialist for. He even saw arthritic changes in my jaw bone.
I just don't get it. Its been three years since I have felt well. I have suffered 5 unexplained miscarriages and now all this sh*t. The drugs make me sick and they don't even seem to be working. I've done my research and I don't see many other drug options.
I feel like such a burden to my hubby. My work performance is lacking and if my boss and I aren't so close, I'm sure I would have been fired long ago. My insurance premiums keep going up and my coverage keeps going down. I feel alone, fat, sick, sad, tired, in pain and don't have the strength to give a damn anymore.
I don't think I could actually go through with suicide because of what it would do to my mom and my hubby. However, I will admit to laying awake at night and thinking about what I would write in a note. I have even looked up to find out what a fatal dose of the drugs I have would be. Do others have these thoughts? I know many of you suffer constant pain as well, how do you cope? I try to stay positive and find the happy things in my life, like my puppy dogs but than I think instead of having a family and being "normal" i have no kids and too sick to even consider adoption. I just have a really bad case of the "why me?" right now. Thanks for letting me vent.
Michele, here's what I want you to do and I know that you might not want to, but I've done for myself and for my daughter more than once. You do sound suicidal. You need to call a crisis number and get someone over to your house today.
I do believe that all these medical issues are the reason behind these feelings. But getting a crisis counsellor involved sometimes can get you in touch with people that can help you that you didn't know anything about. You need this help first.
I remember when you posted the pictures of your hands. They were very swollen. And, the deep grief over not being able to pursue having a child. I think getting to the teaching hospital is a really good idea. But it sounds like you need to be hospitalized for your medical problems. You need to insist that your doctor puts you in the hospital. Enough of this runaround, it is killing you.
These are very serious symptoms that you are having. No wonder you have miscarried. Your body is having trouble sustaining itself. That's probably the big reason you cannot carry. If they find out the underlying cause or causes, you might be able to get the right treatment and even reconsider having a baby. I feel so much for you.
When they did the Cardio workup did they do the nuclear stress test, echocardiogram, angiogram, etc? Did they send you to a Cardiologist for complete review. Same thing with the lungs. Did they get a Pulmonologist to do a complete workup? If they just did a couple of tests in the ER and didn't send you to these specialists, then they gave you the "bum's rush."
RA can cause serious complications with the heart and lungs. If they didn't do these things, you need to have them done right away. Also, add a Gasterentrologist to this mix.
You have to see these specialists. They look at RA from a different viewpoint from even the best Rheumatologist. They can spot a developing problem that your Rheumy might not see because it's not their speciality.
If all the lung and heart stuff is ruled out by a real Cardiologist and Pulmonologist, then they should be offering you a cortisone shot in your rib cage to reduce the swelling. Darvocet does not cut that kind of pain. They gave me Percocet for that.
You are not getting proper care and it sounds like you are seriously ill. Heart problems in women are hard to diagnose. But it sure sounds like you are having some problems there. They should be doing the halter test where they record your heart rhythms over time. This feeling of dying, this dread of it, can be a symptom of heart problems.
You are going to have to fight to get better. Get on the phone and call first the crisis number. Get them to help you speak with your doctors.
I really, really think you need to be admitted to the hospital for observation and diagnosis. Save your life here, please.
Michele,I'm not exactly sure which cardio tests they did. I had a stress test, the treadmill thing, about 4 years ago but that was for a completely different thing, turned out to be gallbladder, which I had removed. I did have a sonogram and echo cardiogram of my heart last November when I was pregnant because I kept having heart palpitations but again, they said everything was fine. I have not seen a pulmonologist or a cardio specialist, the er docs, my primary and two rheumy's have all said it was "just" costo. I haven't even worn a bra in the last year because my chest hurts too much!
I have been to the gastro docs, three of them in the last 5 years or so and most recently a crohns specialist just a few months ago. From about the time I turned 16, I'm 36 now, until about 9 months ago, I was always constipated. I took miralax, a prescription laxative daily for YEARS. Than, one day, all the sudden it switched to diarrhea. I have told all the docs and no one seems concerned at all, they just give me stuff to slow it down. I have had the specila blood work that says I have a 78% chance that I do NOT have crohns. I had a recent upper gi and abdominal cat scan and an upper endoscopy which showed some irratation from gastritis but nothing serious.
The yeast infections are a recent thing, so I will mention it in a couple of weeks when I see the rheumy again.
I have written down two crisis hot line numbers to carry with me. I know if I can get this pain under control, I will be able to cope. My hands are even more swollen than the picture I posted a while back and they shake uncontrollably. I mentioned the shakes at the last visit and the rheumy said it was probably from decreasing the steroids but I don't find that information anywhere else. I know if I call the rheumy, she will just tell me to increase the steroids, which I know will make my depression even worse but if I tell her that, she will send me for a psyc consult and won't treat me anymore. Its like a big catch 22. It seems like there has got to be something else to help short term with the swelling and pain besides steroids. If I take enough vicodin, I can function but it doesn't help at all with the swelling. I can't do any of the nsaid drugs because of gastritis issue and a previous bleeding ulcer. I see the rheumy on Jan 4th and I will stress to her how I can't take this anymore. If she won't do anything else, I will go to the hospital then, even if it is to the psyc ward. I just need to make it through the holidays for the sake of my hubby.
They cannot rule out heart problems without a consultation with the Cardiologist. I have reoccurring pericarditis and it takes all three: Rheumy, Cardiologist and Pulmonologist to rule out that. It may be that they are finding Costo by pressing on your breast bone. But you are having other symptoms.
I'm glad you are going to keep the crisis numbers with you. I really think you need the work up by the Cardiologist and the Pulmonologist. It is possible that you have Irritable Bowel Disease or Inflammatory Bowel Disease. These are not as serious as Chrohn's but can be awfully hard to control at first. IBD is often associated with FM. I have found the GI doctors give you very little information on controlling symptoms. Pick up a good book on controlling the symptoms by diet and stress reduction.
You could be having panic attacks on top of everything else. This can be caused from heart problems, thyroid problems or psych problems. The high dosage of Prednisone will make your heart race. It does mine. To counteract that, they put me on Xanax for awhile which is similar to Ativan to stop anxiety attacks. When mine Cardiologist looked at the whole picture, my heart checked mostly fine. But he did put me on Toprol XL to slow my heart rate and added Nitroglycerin to see if it helps with the chest pain and sometimes I do use it.
Over time, I have come to realize more what is the Costo and what is a heart problem. But they really glossed this over with you.
It may be worth getting a referral to a mental health provider for evaluation of anxiety and depression. This should not preclude you getting treatment by your Rheumy. That just doesn't make since. My daughter has both psych and health problems. They have to treat both.
The ideal situation is to get all your doctors to work together and talk to each other. A primary doc should be involved in coordinating this, but sometimes they can make a bigger mess of it.
Michele, there is nothing wrong with seeking out this help for yourself. It could help rule out some of your problems and give you support with all that you are going through. It sounds like you have been going through a very scary time for quite awhile.
Call someone on your own. It doesn't hurt to ask for help. If you do see a mental health provider, the first thing they should do besides the initial meeting is bloodwork that includes checking your thyroid.
Some of your symptoms might also fall under the jurisdiction of an Endroinologist. Even your hormones could be causing depression and panic attacks. With all that your body has been going through, I would be surprised if your hormones are not out of whack.
Just don't give up hope because I think the right doctor is going to be able to help you a lot.
If drugs can not work, then you should try this herb especially Wild Lingzhi (not cultivated), a truly universal herb. Should like more info contact kokako88@yahoo.comThank you Deanna. I have had the thyroid thing checked several times, most recently this summer and it always checks normal.
I was under the care of a reproductive endocrinologist for over a year with the fertility issues, before I was dx with the ra. My progesterone runs a tad low but otherwise my hormones have always checked out. I am on a monophonic birth control pills right now to help regulate everything and avoid migraines from estrogen withdrawal.
I had been seeing a shrink for over a year but stopped going this past summer, just because, honestly, I don't have the energy. She doesn't do Saturdays and I work until 6 so when i went after work, I wouldn't get home until around 8:30 and I was just too exhausted. I guess I could give her a call and explain it to her and see if should will just do a session or two over the phone so I don't have to drive so far. She is a super nice lady and I'm sure she would be willing to help. Frankly, I am a bit embarrassed to tell her I am feeling so rotten.
I was dx with IBS when I was 16 and do follow an IBS diet. It just baffles me how I would switch from extreme constipation to extreme diarrhea for no apparent reason. I have recently had the gi tests and stool samples and nothing much shows up. I need to buy stock in baby wipes!
I feel very isolated. My husband is very supportive but he recently went on antidepressants as he is having a difficult time dealing with all this. He has no idea how depressed I am. My best girlfriend seems oblivious as well. I don't feel that I can confide in her because her fiance committed suicide December 3 last year and I just can't put her threw the emotions of something like this.
I am just tired of struggling, of not feeling good, I am sad for the loss of my babies and my health. I keep thinking tomorrow will be better but it never is.
Michele, I think it is a great idea to call her. You really need to reach out to a human being that can look you in the face and give you some compassion and understanding.
With everything that you have been going through, it is no wonder that you are feeling depressed. Just having a miscarriage, just one, is enough to make a great deal of women very sad. To have had five is far too overwhelming. When my sister was going through that, she couldn't even communicate with me about how bad she was feeling even though I tried to talk to her. She just knew that I had my two kids. We both knew that I could never understand because it hadn't happened to me. She does have a wonderful, adopted girl now and she says she doesn't even think back to those former days. But all of that took a long time. Still, it can change.
With all the physical trauma and illness that you have been going through, your body is drained. It is going to take awhile to build it up. RA and FM both rob you of energy, especially FM. Antidepressants might help. I don't know. No one has given me any real answers that I'm happy with on FM. But the fatigue from both is a killer.
I have had that switch happen in IBS except I went the opposite way. I was under a great deal of stress and everything poured through me. When I left the job I was in and got out of the reach of my ex husband who was stalking me, things did calm down. Unfortunately, as long as you are under such major stressors, it doesn't give the IBS a chance to calm down no matter how diligent you are to your diet. You don't have a lot of control over these stressors.
But this may be one area you can find some improvement. Some medications will really through you off. MTX really did a number on me. But other things might as well. It might be that a change in just one medication will give you some relief.
Also, you need to look at ways to boost your nutrients if you are having such a severe problem. It will help with your overall energy, even if it is only a bit.
I think you might want to reconsider talking to your husband and your best friend. As desperately down as you are, you are not giving them a fair chance to help you. How would your husband feel if you actually acted on these feelings and never even talked to him about it. It would devastate him. He already is on anti-depressants so that's going to help him deal easier. A lot of times, men need to be told specifically what you need to do for them. They are big problem solvers. When they can't solve the problem, then they tend to feel useless, depressed and that they are failures in some way. If you give him specific things that you need help with, I think he might rise to the occassion. For instance, tell him how down you are and that you need help to get someone to help you with this. It's not his fault. It's not your fault. It is the circumstances of your lives.
Do approach your girlfriend carefully. Maybe you could ask her how she would feel if someone else that she cares about was feeling like her boyfriend did? Would she want to help? Or, would it be too much for her? A lot of times the pain in losing someone to suicide is that you didn't know there might have been something that you could have done. Tremendous guilt weighs on the survivor. Helping someone else may even help her.
The other thing to do is try joining a support group. I would look for one for women you can't have children. This seems so at the core of all your pain. You have the illnesses. But it is really hard to fight against them when your heart has been so broken. I think it is especially hard in this society that likes to forget that bad things happen to people like the loss of their babies. I know each one was important to you. You are not done grieving and you and your husband have the right to grieve over that loss.
I imagine Christmas makes it worse with all the shows and expectations. I know I'm not fond of the holiday myself for those reasons. Maybe you and your husband could go off away from other family members and the normal festivities and just enjoy each other. Don't let all of this separate the two of you because it sounds like you are wonderful together.
Michele, there is always something bad that will be happening in one's life, always something to overcome. But the loss of those we love does diminish with time and the empty places in our live to fill with wonderful things.
I have lost a great deal in my life. But I always try to think of it as God is just cleaning out the room so He can fill it with even more wonderful things. He always does. I am just a little slow in realizing it.
You are looking for help and life. Reach out to many people. Live, Michele, because it is worth living. This is a rough time but the days will get better. Right now you just need some help to get through this time.
You are in my thoughts, my prayers.
You have such a wonderful attitude and I appreciate your kindness greatly. I am on 100mg of Zoloft and take xanax at night and sometimes during the day if I need it.
I think you're right. I just haven't had time to recover from anything and I'm drained. My hubby called a little bit ago and I was crying when I answered the phone. He has been very sweet. Part of the problem is I don't know what he can do to help. he is good about helping around the house and cooking and such. He is good at saying just take it day by day and that he is there for me. But, he can not take the pain away.
I am not done grieving my babies and it upsets me when people change the subject when I bring them up. I know most people just don't know what to say but I get even more upset when people try to pretend it never happened. I have thought about the support groups but haven't felt strong enough yet to actually go. I was on a message board like this one for repeated miscarriages for a while but it was too difficult after a while.
We are visiting family for the holidays. My mom is pretty good at understand as she isn't healthy either but she smokes like a chimney and it makes my chest her soo much worse. I have explained this to her and she tries to smoke as little as possible while I am there but her whole house smells of it.
My hubby's parents are less than understanding. They think I should be over the loss of my babies and can't understand why I am not as fun as I used to be. We used to go and have a few drinks and play cards and stuff but I can't drink because of the mtx and it just makes me more nausous now and I just don't have the energy to put on a happy face when I feel so bad and I resent the fact that they think I should. I mean, I try and be social for dinner and such but I am just not up to running around and going shopping and doing things I used to do. Not to mention the 4 hour car ride each way and the brick of a bed we sleep on while there. I am actually going to bring my blow up mattress which isn't too bad to sleep on!
I'm still not sure about my girlfriend. I have tried to hint at how crappy I feel and how depressed I am but she just changes the subject. I am not sure if its because she can't deal with it or just isn't getting it?
I am looking for help and life. I am not sure what kind of help I need, other than to make the pain go away. As far as life, I feel like I am just trying to get through each day, that I don't really have a life, just an existence. I keep thinking it will get better but its been several years and the light at the end of the tunnel is still very dim and very far away.
I was just wondering if you and your husband could play hookey from the normal Christmas stuff and just do something that you both want. I would find trying to celebrate with others when you are both feeling so drained just formidable.
Just talk to him about it. You and him are family, the basis of any family that you have. You need to nourish that. You deserve time to heal from all the pain of your multiple losses. If someone had lost five life born children, everyone would be so much more sympathic. But I remember the first moment I felt life inside of me and I was very lucky that I made it through that pregancy. My second child also almost didn't make it. Still I have them. I didn't go through what I consider the worse loss in the world, the loss of a child.
You have to cry the tears and you must feel the sadness. And, somedays all you will be able to manage is just existence. But that is ok. You are still in the process of healing. It does take time.
The fact that your health is also affected by so much adds to the great loss and grieving.
You cannot change what has happened to you. But you can determine how you are going to let others treat you. If you do decide to go and be with the rest of the family, don't bother to pretend all is ok. Be honest and when they protest, tell them to back off. You need comforting.
I don't know if you did any kind of ceremony regarding your babies. But if you didn't, this might be the time to do it. I really wish I knew more to help you because I can feel how bad you are hurting.
But hang on. I would give almost anything to have a wonderful man like that in my life and that has never happened to me. I grieve the disappointment of that. But still I have hopes. Even with all the health problems, I hold on to hope. Hope sometimes is the tiniest spark. But the more you focus on it, the brighter it grows.