I can't believe there are so many people who are experiencing the same pain I go through on a day to day basis. I have ok weeks, then for whatever reason- maybe I overexerted my joints but then I have a week where I can't get out of bed, I can't pick up a carton of milk to pour for my 2 year old and 7 year old. Last night I was laying in a hot bath which I so often have to do and I was thinking to myself "ya know the only thing different than me and someone that's hanging on to dear life in the hospital is Im out there pretending to make it when Im on so much medication, and have a full time job, Im a single mother with 2 small kids, and I have to pay all the bills by myself. There is no difference with the pain... they are layed up in the hospital, and here I am walking around with so much responsibility, so much Arthritic pain, and dealing with doctors who just don't give a flip about and don't have a conscience about letting me.. a walking pain case... just slowly die a slow death. No one understands that much about it. They just treat Arthritis like they are flying by the seat of their pants. There are so many days when I ask "Why me?" "

Im going for more blood tests today so they can "rule out" things. Re: meds, I have taken Daypro, Celebrex, prednasone, and a ton of NSAID's. Does anyone know of an anti-inflamatory that works? My doctor gave me Bextra but so far- no difference in the pain. I have arthritis in my hips, shoulders, knees, hands, and elbows. Most of my pain is in my Si Joints. If anyone knows of a really good NSAID that does not hurt your stomach- please let me know.

Im Sorry all of you are going through the same pain. It's unbearable and needs to be stopped for good. There is no sense in anyone having to live in a body that makes your mind think of nothing but but the pain. I want to live!

I've never gotten remotlely complete relief from any anti-imflamtory, it's probably the case for anyone with severe arthritis. I do take bextra and get mild relief but the joints are so far destoyed not much will help.

If you are suffering that much you truly should see out a pain management specialist to try to get the pain under control. Also seeking counseling on how to deal with the pain is very important. Another option would be to check into a pain management program. Most PM doctors require that you do one or both so that you aren't reliant on medications but instead do learn some coping techniques to get through the day in addition to any medications.

Good luck

Thanks K!
I have thought about it. Im starting physical therapy tomorrow and after 2 weeks will see my doctor again. I will ask him if he knows of a good pain mgmnt doctor I can see. Right now the pain is consuming my life.
How are you coping with your pain? You said you still have a lot.
Thanks again, and thank on the update re: Bextra.

I just live life one day at a time, there was a time when I let it consume me and I was very depressed over it, I sought out a psych who worked with pain management and it has helped alot. I also took a pain management course. Currently I'm on anti-imflamtories, anti-depressants more for panic attacks than anything and am seeing a pain management specialist.

One thing we need to realize is when you have chronic pain every day of your life chances are you will never be 100% pain free so you try to set a goal of what is a reasonable amount of pain you can accept. It's hard I know, been there, done that, but I know it can be done. I've had CP since a child and just have learned to adapt.
Some days I rest alot others I will sit in a warm tub or walk around in our pool when the water is warm. Some days I just sit and cry and it's ok to do that too just don't allow yourself to do it for days on end it could end up a severe depression. Depression is very normal for anyone with CP regardless of the type of pain they have. Arthritis can be very dibilitating.

Doing things that distract your mind such as cruising the net, playing games, reading, watching tv things like that help alot. Read a book to your children or do something simple for them and with them, it will bring you so much joy and they will appreciate the time you spend making them smile even if you feel bad yourself.

When pain is at its worst try to focus on something positive or beautiful such as the sounds of the ocean and slowly deep breathe and tell yourself you will get through this, it is ok, trust me this works I've done this for years. I also have mycrocytic colitis and IBS and sometimes the rapid onset of the pain just makes me want to die it's so harsh, but it passes.

You said you have arthritis in your hips, is it severe enough that they need replaced or are you at the stage it's severe pain but not severe enough for replacement? I had my last replacement at age 27 (am 38 now), the year prior to having it done I could barely walk it was so bad. Took about 2 years to really heal up well and did help alot. I still have hip pain but it really is more stemmed from my back and not my hip, the hip is strong and heathly.

I know how hard it is with small children, my boys grew up watching me suffer, they are now very compassionate individuals for what they have gone through.

If possible do you have a family member who could take the kids for a day or over night to just give yourself some time alot to rest, take a hot bath, read a book, just relax, you need it. Even a healthy single parent needs it let alone one who is disabled by arthritis.

I've been where you are and it is ok to be upset over this. Again, I was angry for many years because doctors wouldn't help me. I have a post in the pain management area asking about upping meds, you can see what my complete history has been and the struggles I've face. I am fortunate I have the worlds most loving husband who will do anything for me when I have the bad days, my children are the same. I truly hope you have the support of some kind be it family or friend who can help you with this, you can't go it alone.

If you can try to see a psycholotist or regular psych who deals in pain, it will help you alot in the long run. Call the red cross in your area and ask if they know of any pain support groups or your local hospitals, the more positive support you get will help you manage even better.

Good luck to you and just know we here on the board do understand and are here if you need to bend an ear.

Hugs
- Barbie

:cool: Oh Barbie! Im crying lots of tears right now. Im scared, so scared. I really do want to chain myself to a hospital bed and demand to get well or have a game plan. I am in that lowest place anyone could ever be. My older daughter just saw me crying and she said Mom we love you. well help fix you.

Oh I'm so very sorry I certainly hope I didn't scare you, never my intent.

I know it's hard, many of us do we are in the same position as you are so you are not alone at all. I also believe many of us hit the point you do at some time or another, it's pretty natural and normal.

Just so you understand what I meant by we are never pain free, the truth is we aren't, but it is reasonable to believe that you can get the assistance you need to lead a fairly normal life and be functional with minimal pain. Sure some days you might have more pain but that happens with arthritis or over doing things when we feel good. It's a cycle and something I had learned to break when I had taken pain management courses. We have to learn ourselves that when we have a day that's fairly normal or as normal as can be for us that we still need to take it easy and not over do things to cause us to go back into the loop of pain.

I think what you need is to get yourself some support system going. You mentioned going to therapy I would ask the therapist about any support networks for pain and or arthritis in your area. I would also call the arthritis association and talk to them as well they may have a group going on in your area. It will give you the opportunity to share with other folks what you are going through and they can maybe help guide you or give you the names of doctors in your area who they have found really helped them. There are also some email type groups on the internet that may be of assistance too. They way I look at it the more moral support you have the easier it will be to cope.

I think you should consider counseling too. I know that's the hard part. It was for me admitting I had the pain issues I do, sometimes it felt like I've admitted defeat to my disabilities. But in the long run it helped me alot to accept my problem and learn skills to help me through times that were or are rough.

I'm not sure what state you live in but where I live in Ohio there's actually places that will help assist those with chronic disabilities, especially if you are considered low income. They can come to your home and give you some of the assistance you need or open doors to get help and support. It is perfectly OK to have someone help you.
It was hard for me for years to accept the help of anyone but I didn't have a choice and now my life is better because of it. I still have days where I'm stubborn and just want to do things on my own but that passes fast when pain sets in.

Things can only get better if you seek out the proper channels for support and help, you can't do this alone, no one can. This will help you come up with a game plan on what to do next and give you a little hope for tomorrow.

Look at it this way, it seems you have hit rock bottom in dealing with your health, things can only get better if you seek out some assistance, even if it's only a good friend to talk about the pain with. Right now it seems you are doing what so many of us do, let the pain control your life. What needs to be done is one needs to reverse that and regain that control and you do that by small things as mentioned above and live life one day at a time or even one moment.

Relish the moments you have that make you smile or warm your heart those will be key in helping you focus when you feel your worst.

I truly wish I could be of more assistance or had the magic words. I will keep you in my prayers and hope that you can find some tools to cope and somehow regain your life back. It can happen, you have to believe that.

Hugs
Barbie

Sarandipity~
I truly hope you can get some answers from your doctors. It sounds like a lot of people here are wanting to help you. Please let us know what you find out. I think it is harder to deal with pain when you don't know what exactly is going on. I don't always like putting labels on my problems(probably some denial going on still), but at least it makes me feel less insane. Before I was diagnosed with PA, My GP thought that all the symptoms I was having was the result of depression or anxiety. She said when a person has all these symptoms, it could be a sign of depression. I used to feel crumby every day. Always had the joint pains, but I also felt nauseous all the time...thought it was because I was taking vicodin, tylenol, aleve.. drugs that I just took to help with the pain, not really knowing that they could mess up the stomach. I was and still am tired a whole lot. The pain makes me an angry/ frustrated person, and I really don't want to feel that way. I was taking PaxilCR for a while before I knew what I had, but I stopped it because I really wanted to find out what was causing all that pain and although I was depressed because I was in a lot of pain, I was able to find a way to get my mind off of things and slowly I was able to go longer periods of time without getting so sad. It is soo easy to slip right back into a depressed state if you can't find a way to keep your spirits up. I try playing cards or games to get my mind off things, even doing a puzzle. It hurt so bad to do a puzzle, but it was therapeutic at the same time.
I will have to read your other posts, but I think you said in '99 you started having the back pain, is that right? What did the Dr say he thought it was? You said you had some things done to your back- what did that entail??.. I don't have much knowledge on the spine, bones fusing, and all the things that can go wrong with the back. I would like to understand how you know if your discs are degenerating. What would be some signs?
So far my Chiro gives me adjustments 2x a week and he thinks my back pain is due to something other than arthritis, but I don't know what else it could be. I had never had back pain before the arthritis started, other than being in a car accident a long time ago and it hurting short term.
I live in Austin and I wish I could help you. It sounds like you are in more pain that I am and I could only imagine what that does to you. I think you are amazing for being able to take care of your girls, work, and do everything you do while being in that much pain.
I have been going to the pool with my girls and it seems like it helps a little bit. Doesn't hurt so bad in the pool and I have fun with the kids.
Did your pool therapy help you at all?
Sorry if I'm rambling. Take care.

Stacey,
Made it to the P T today and also my PC Doctor. Lots to tell you. Let me get the girls out of the bath, and feed them dinner. I wil write u in a bit.
I have Fybromyagia@@@@@@@@@@@@@@@@@@@@

Glad you were able to get some answers! Thank you! How do you feel about what the Dr. told you? If I don't see your post tonight, I will read it in the morning. Last year my sister asked if I had Fibromyalgia, but my doctor didn't mention it. Like I had said in a past post, so many of these disorders seem to overlap, I wonder how we can get an accurate dx. Is there a definitive test for that? I will be interested in hearing what you have to say. I have occasional ringing in the ears with a feeling like having water in the ears or having a bunch of cotton stuffed in them. That has always concerned me since it just started around the same time as everything else.
Anyway, I really want to hear everything, so hopefully we can write over the next few days. I am sure everyone here is anxious to hear from you!!! Take care of yourself! ~Stacy

As far as I know there is no current test for FMS, it is more a series of elimination of other diseases or such and is characterized often by trigger points. It is said that one should need to have a certain amount of trigger points of pain to be FMS.
Unfortunately sometimes the dx of FMS is often only the secondary problem to something that is primary that may not have been diagnoses or just a result of having say arthritis. Sometimes it is a garbage dx when doctors can't figure out what is really going on.

I hope your therapy went well today and that things are looking up for you a little bit!

Sarandipity,

I just stumbled across this board. I was diagnosed with RA about 8 years ago. My first RA doc was a real jerk - first meeting he told me I would be in a wheelchair in 5 years! As you know, this was just the beginning...

Gosh, how I can relate to you. I think the fear is the worse thing, especially being single. I am a 45 yr old male. I had a moment just like you recently. My birthday was coming up, and the RA was kicking my butt. My new boss was worried about it. I am "key personel" (a director), therefore "little protection". I was really worried about getting a pick slip and then what would I do? As I walk to the interviewer he notices my limp, and I grimace in pain when he shakes my hand? I mainly took off so, I hoped, with less stress it would get better.

Wrong, it's like my RA "had permission". I went into a major flair, and one day before my birthday I tried to get my (new at that time) RA doc to give me some prednisone. His Nazi nurses thought I was avoiding an appointment and would not give him the message.

God, it's painful even to remember, the next day, on my birthday, I thanked God that I had left pain medication next to my bed, and water, "just in case". Well, even with it, it took me two hours to make it to the couch. I fought with the Nazis several times to no avail, now it was a "server" problem which I knew was BS because I am a dir. of IT! I even offered to fix the comp. in exchange, I was so desperate. Then, as I sat on the couch, so swollen I thought my calfs would burst and unable to move, my family "forgot" to call me. God was I miserable and lonely. I realized that I had to do something - go on disability, push my RA doc for Enbrel etc., something. I firmly believe that such pain/depression is actually a good thing, a "call to arms". I know someone that takes anti depressants, and really needs to go on disability before that choice is taken away, and is not.

That day, I fully realized that as bad as it was, it could be much,much worse - I do live in a nice townhouse, make a good income etc. What if I got fired? I could end up in a dump in a bad part of town, oh the thought.

That was 1 1/2 months ago. I'm going on Enbrel this week, the doc doesn't challenge me with Prednisone requests. I had a major physical, and except for one not fun procedure :eek: it went very well, my health is good except for RA.

I feel better than in a year, I am building shelves for my hobby room this morn.

Therefore, my advice (two large spoonfuls of salt, please):

1) Take it as a good thing that you are not sticking your head in the sand. It's the motivation that you need to "take charge" of your disease.

2) If you don't like any of your doctors, replace them. It was a real drag, but I have a specialist that is great, a general doc that is even nicer. Both are very supportive.

3) Get pain management. I am on some serious painkillers, and it has made an incredible difference. I would be on disability without them. Nowadays, despite Rush Limbah, it is a proper course, and in fact, by law your doctor has to treat your pain. Make sure you reasearch and are knowledgeable about the options.

4) Per 2, get a good "A" doc that will get you on the right program.

5) Now, the toughest one for me, and I feel, you. As far as family/friends, do what you can as a "regular" adult, and forgive yourself the rest. Obviously your kids are the priority. This was the toughest for me, as I was trying to help sis out and yet my house was a disaster because of my limitations. And in my case, I realized that at ALL costs I had to keep my job.

Things are looking much brighter for me now, I think because I finally really pulled my head out of the sand.

Sorry for the long post, I hope this helps...I really wish you the best, and all others that have to deal with this burden.
M

M- I just posted a new thread entitled " Attn: Advice Seeker and Stacy"
Read it!