Hello everyone, i just found this website, it looks great!
I have not yet been diagnosed with RA, but it looks pretty certain. I am so scared, depressed, sore, having panick attacks, nightmares. My life is falling apart. I am 31 and was planning to get married and have babies soon :(
My knuckle bones have grown and are white when I make a fist, my shoulders are now hurting as well. I aslo had UC and had a j pouch formed and removal of large bowel so I can not take NSAIDS. Is there anything else? Will my hands go back to normal? Please help..
On the outside I look like a normal young feminine woman on the inside, I am rotting.
Welcome, tam.Tam,
Welcome to the forum. Wow what a lot you are coping with right now. Being scared and depressed is common, especially when you don't even have a diagnosis. In fact, it is a feeling that you fight long after you have the diagnosis.
My daughter has panic attacks and nightmares. You need to get this treated because those two things can make all your symptoms worse if you have RA. And panic attacks are just horrible. Start with your GP and tell them about your panic attacks and the nightmares. They should be able to give you something like Ativan to help with the attacks. They should also refer you to both a counselor and a psychiatrist. You need the counselor to find out why you are having the attacks and the nightmares. You need the psychiatrist to write prescriptions to even out your moods AFTER they figure out what is going on.
But having watched my daughter go through this, I can tell it has improved her life a lot. She used to have 5 panic attacks a day. It was horrible. Now, she rarely has one. But you need to know the exact reason behind all of this.
Also, they should throughly check your thyroid levels as these can cause depression and panic attacks and it is easily diagnosed with a blood test.
I don't know the answer regarding your hands and I'm unfamilar with what a UC or j pouch is. I know that there are medicines that they can add to counteract the effects of the NSAIDs. But your doctor is going to have to tell what you can and cannot take.
There is a whole set of medicines that are used to treat RA, NSAIDs being only a small part. If you have RA, they should be able to work around the problem.
You don't have to change your plans on getting married, but do make sure that your guy is going to be supportive about your being ill. Some mates find it a very difficult adjustment. Listen to your heart on that one.
Having RA should not affect your ability to have children. However, if you are planning one in the near future, you cannot take some of the medicines like Methotrexate as they cause birth defects. On the other side, a lot of women go into remission during pregnancy. When you get to that point, if you are being treated for RA, make sure you talk to both the Rheumy and your OB/GYN. They can help you through it.
Your life may feel like it is falling apart. But it is just a matter of getting all the different things under control. I would start with the panic attacks and the depression first as those being under control will help you deal better with everything else.
Lots of good people are here on this forum and we all talk about what we are going through. It's a good place to let out your fears. Someone always has something similar going on.
Thank you so much for the reply...
I have been doing my head in by internet searching, was it my fault for eating more red meat lately? Is it from the yeast infection I have from antibiotics? I think I'd rather stay here where I can talk to real people. I am glad I found this site.
I have had suicidal thoughts, is that common? I am very new to this and the horrible enlarged knuckle bones? is that permanent? People are already looking at me like i am a freak. Sorry if that sounds vein, but this only came up a week ago and I am so upset.
What is UC and a j pouch?
Hi tam.
Of course you are upset and in a panic.This whole business is scary. Getting a conclusive diagnosis will help you deal with your problems and get you the right meds you need to improve your life. It sounds like you are seeing a rheumatologist and GP which is good. Be sure you tell them about all the other things going on like the panic attacks so they can send you to the appropriate specialists. I can't take NSAIDS and I know other people on this board can't either for one reason or another. There are many different medications that can be tried to get your disease under control.It's a matter of trial and error to find out what works. Everyone is a little different and some work for one person and not another.
Your life will improve. I have moderate to severe RA and I still function. I have a job, am married with 2 grown kids, travel abroad, paint and illustrate, interpret church services in sign language. This is not to say I haven't had to make adjustments. I have to allow for fatigue. There are good days and bad days when I don't accomplish as much. I 'll work half time this year for the first time.Everyone on this board is more or less in the same boat. Some are doing better than others but everyone keeps trucking. This forum will help a lot. I depend on it for support and advice. Keep going and I know things will get better for you as you get the medical help you need. I'll pray for you.
Linda
Hi Tam,
I am new too. I am 25 and was recently diagnosed too. I don't know about the knuckles my hands only started hurting 6 weeks ago. I have found that all of this is confusing and sometimes frustrating (and I have alot of patience) I don't have nightmares (from this) or panick attacks so I can't relate, but I am sorry. i do get depressed and sad.
The only time I wished to die was when the pain was soooo bad and I didn't know why, before I was diagnosed(I'm really happy I didn't die theres so much more to life). Now that I know why and I know it can be helped I never think it anymore. Things will be better. Glad you came here.
The nightmares have been about the RA. I become deformed in a matter of minutes. Also have the panic attacks, whenever I think about it and cry too much :( Do peoples knuckles normally englarge and go white? Has everones looks/bone structure etc changed?
What does this mean for the long term for someone my age?
So full time work will go?
UC is ulcerative Colitis, another auto immune thing. Your body attacks the large bowel and all the meds are the same. Prednisone etc. However, as I took that for long periods of time, there is a strong chance I have osteoporosis. Yep all of this before the age of 30. I could not get that under control so they had to reomve the colon and reattach the small bowel in the form of a pouch as the new resovouir, but it is not perfect, it gets infected continually and I am nearly constantly on antibiotics. So that counts out NSAIDS, Steriods, I already take salazopyrin, for the bowel which i don't think helps much for either disease. I am embarrassed about having so many problems.
Tam,Tam, I don't want you to think that having RA means you won't be able to work full time. Many people continue full time work despite RA. Some can't. I'm doing a reduced workload this year but I'm 60 and many people my age retire completely by this age. Give yourself some time to get diagnosed, try your meds, and improve. I know it's hard when you're feeling so bad right now, but I think there's every reason to expect you will improve and the quality of your life will get better.
Tam, thanks for the explanation about the UC, etc. That is also an inflammatory disease, a very painful one from what I understand. No wonder you are panicing.
It may be you have had inflammation going in other parts of your body for some time and that's why you have the sudden appearance on your hands. Hopefully, medication will reduce this. I don't have this problem, so I don't have any idea.
If you really start feeling suicidal, please do call a crisis number. If you are just feeling upset, it can be a really good idea. When I was dealing with my daughter, I did this a number of times and I am really glad I did because I needed that extra support. Sometimes, they will even send someone out to speak with you and direct to some immediate help.
Sometimes, another human being is the best comfort there is. I'm sure if we could, we would give you a hug.
It is going to be alright. It will just be different. You've already gone through a lot worse than most of us do. That has already made you strong.
Thanks, i'm sorry to sound so stressed, when I know there are other people here probably worse than me.
What a lovely group of people I have found here, I am relieved! And I am not searching for symptoms and depressing myself now. However I just noticed that my fingernails just went totally blue, is that normal? Well ok, none of this is normal ...
Thank you all for making me feel better :)
Tam,
Everybody has the same kinds of problems and believe me we all have are "stress days."
Concerning your blue fingers, two possible things could be happening. One could be if your are hyperventilating, say from crying a lot, you might not be getting enough oxygen. In that case, breathing into a paper bag (not plastic) slowly should make an immediate improvement.
If that's not the problem and you are still not getting enough oxygen (are your lips blue as well?), then something serious is happening and I think you should call 911. They can come out and check your oxygen level and see if anything serious might be occurring.
There is also an autoimmune disease called Raynaurd's. If you do a search on it on the Internet, you will see pictures. It causes the fingernails to turn a dark color when the hands are cold.
You need to get in to see a Rheumatologist pronto. You may have to get the referral from your GP first.
tam welcome,I am new here to but I have found good advise and comfort here,these people know what their talking about cause they live with it everyday,its NOT your fault,some say its genetic but others say it just happens,you need to tell your rheumy about your dreams and thoughts, he is there to help you and can get you help through local supports groups,I take it day by day,I'm 36 and manage a resturant working 14 hour days 6 days a week,if you set your mind to it there is nothing you can't do,even work,maybe not full time but you can only do what your able to do but don't over do yourself,we are here to pick you up and help in any way,remember there are no stupid qurstions,good luck Hey Tam. I'm new here too. I have Raynaud's disease (hence the lovely blue fingers) as well as RA. I remember when I first found out (in April) and was in so much pain. I remember one night in particular where I couldn't sleep because the pain in my hand was so intense and wouldn't let up. I didn't want to wake my husband (what could he do afterall?) so I sat downstairs in the dark and sobbed. I had crazy thoughts brought on by the pain. I actually contemplated going into the garage, getting an ax and taking my hand off. I was trying to rationalize "Hmmm, it would be hard to live without my hand but not impossible". CRAZY. Fear and pain make us think things that are not rational. You need to get the pain under control asap. Have you started any meds yet? As far as your joint disfigurement, xrays will tell your doctor if that is permanent or not. Luckily mne was not permanent (I started to have the telltale bulges on my fingers) and they went back to normal soon after starting meds. Take care, nice to meet you!Thans for explaining UC. Sorry so much is going on, but you didn't bring it on yourself. I mean there was nothing you could have done to change the outcome. So don't blame yourself.Things will get better. Just remember there are alot of people you can talk to so you are never alone. Hope today isn't so bad.
Tam, you poor thing. You've been through alot. So many of us are going through so much..... But, know that you will feel better and concentrate on staying calm; becuase stress can bring it on worse. Talk with your DR's and ask them for help. And come to this support group. I am new here to and already have learned so very much.
take care, Jody
Thank you everyone. I am feeling much more positive today! I want to say again, that I am so happy I found you all
I bought a book about eating for your blood type "Arthritis, fight it with your blod type" By Peter J Adamo and Catherine Whitney if anyone is interested or maybe you have seen it? Its about changing the food you eat (blah) in order to reduce symtoms. It makes very much sense in the fact that I had started foods in order to tidy up my diet that the book says is bad for my blood type ie wheat, it also explained that my blood type is inclined for gastro and arthitis inflammation, so I am gonna give it a go. Its worth it! Unless others know that this could be negative? It has some big changes!!
I am relieved that some of your prominet swelling went down with treatment. I had a bone scan yesterday and awaiting results.
Great to meet you all, and I will update my details soon. Am an Aussie gal!
Hi tam: I doubt that your enlarged knuckles are permanent. Since it's early in the disease, they are probably severely swollen and because everything is stretched so, they're white! My hands were horrible at the beginning, and so painful that I wound up in the ER with extreme nausea and vomiting. The ER doc said I was in that condition because of the pain I was experiencing. You have a right to be scared, depressed and panicked! RA is a nasty disease, but the good news is that once you have a diagnosis and get on the right meds you'll be likely to experience a drastic change for the better! Don't consider suicide -- it's very brave of you to even mention it to us here on the boards. Having those thoughts doesn't mean you're crazy, just that you feel out of control and need some help with all of what's happening to you. Talk with your doc about how you feel asap, talk with family, even though it might alarm them, and talk to us. Hang in there. Carole
Hello,
I think it was a lot to do with the nightmares and the internet searching, looking at pictures etc. I have a fantastic boyf (soon to be fiance) and he is helping me in everyway. I'ts true I was feeling like death was a better option. I had ideas of starving myself as a way out. I think my realisation was seeing my boyfriend cry for me (bless) in my teary tantrum. I also felt that way for a few weeks when they told me i had to have a 'bag' although its gone now. I was mortified! I was a single 26 year old woman. Who wanted that! I guess its part of the grieving process for me. And all of you have really helped brighten my day...
Hi Tam, I feel for you, I really do, but you are in the right place and fancy having such a caring guy, hold on to him, I think an illness can bring you closer, my hubby and I have been married 21 years and we have a renewed love in our marriage, he is so caring and our kids are only 9 and 6, he is fantastic with them, I am fairly disabled from RA among other things, but I still feel like the luckiest girl on the planet with my two gorgeous boys and wonderful hubby, you will get there, of great importance is a very understanding caring GP, and a great rheumatologist with a caring manner because mostly they can't do too much for us but just knowing they understand and that they are doing their best for us is sometimes enough to get us through our bad days. Try and split your time equally between work, rest and play, work doesn't have to be paid work as some of us can't, but you need to listen to your body and pace yourself, this takes some practice and in my case hard lessons but you will get there. Take care and look forward to your posts. Regards Janie.