Time to give up | Arthritis Information

 

My husband and I have been talking, and if I don't get a Dx by the end of the year I am going to have to stop going to the Dr. We have spent so much out of pocket this year on Dr.s and drugs and nothing to speak of from it.

My husband says I am bankrupting us and I have to agree that based on $ I make versus $ I am spending, it is true. I can't do this anymore. After December, we'll have to pay the deductable again, and we just can't do it.

I hate to surrender myself to feeling crappy all the time, but maybe I am just supposed to feel this way. Maybe the 1st Rheumy was right and I need to lose weight and exercise, perhaps 40 pounds is not enough to have lost this year since I am still overweight.

I am crying because I feel like I have taken things away from my family because of all the $ spent on trying to make myself feel better. I guess since it has been almost a year and nothing I have done or the Drs have tried is helping, it is time to give up and resort to this being my "normal" way of feeling from now on.

Maybe if I get to the point where I am completely disabled and immobile, someone somewhere will Dx me with something. until then I guess I will just do what I can until i can't do it (either physically or emotionally) anymore.
You owe it to your family to make sure you never become completely disable and immobile, so you have to keep searching and fighting! Even if they don't understandNever give up - never!

Your kids deserve a mom who's not miserable (they have got to be feeling your pain) and with a full time job on top of it, you have got to be stressed, even if you were healthy you'd be stressed.

My DH has good insurance through his job, 80% until we pay the first ,000, then 100%. But that's 1/3 my income to pay the ,000. The new year is a terrible time of year for me too, and Remicade adds up fast, it takes me months to pay the hospital.

Did you ask your husband if you were so miserable you couldn't work where would the money come from? I hope you get a DX soon, there has got to be relief in just that, ask Micheleb, but then what, you'll still have medical expenses.

No free clinics here.

I just can't go on like this, I  am really not sure it isn't just "all in my head". 

I have an appointment on the 22nd. I am going to it and will ask the Dr then if there is anything else he can do/try/put me on/ect. All he has done is a pred taper. I felt great on 20 mg but once down to 10 mg started feeling bad again, and now on 5 mg it is like I am not taking it at all.

I really think an xray or MRI should be done, none of the 4 Drs I have seen has done one. I don't think doing the same blood work month after month is going to get me a dx. It really hasn't changed that much. I don't know what else to do. I feel like I am going crazy. Maybe I should see a mental health professional instead of a Dr.
Now they do not just put you on a pred taper if they think it is all in your head. Do you have swelling? That is tell me all your symtoms. Please because i can tell you now. A psychiatrist will probably cost you more money and you will still be sick. Tell me all your ills I work cheap. I really do not think your RD is done with you. So please don't feel crazy. In the beginning for many years I was treated that way. I also never new you could have Sjorgrens without having RA or diebeties or something else. I always was sure i had that now it is really bad and there is no question. My Rf took years to show it's self. I am sure but you check have they done an anti-ccp? Also prednisone can mess up your bloodwork. Maybe scince money is tight and this is hard to do. I can not do it. Can you get off of the pred long enough to get good bloodwork done?  Ask the doctor? Because they keep running my bloodwork when they know well and good nothing will show up while i am on prednisone. This maybe why they have you down to 5 mg before appiontment. They may increase it after they do bloodwork.I know how frustrating this can all be when you can't seem to get a dx, I've been trying for 3 years now! But giving up is the worst thing you could do. When you go back the RD, don't wait for him to suggest an MRI, xrays, or any other tests,  ask for them. Explain that your insurance benefits are about to start over and that you would like to get all possible testing done before you have to start over with your deductable. Keep being proactive, no one knows what you are feeling but you, so no one has the right to tell you it's all in your head!I started feeling bad around the first of the year. I had a bout of flu (even with the flu shot) and never felt like I fully recovered. By mid february, I decided to go to the Dr because it was getting worse. My main complaint at that time was extreme fatigue.  She Dx me with high blood pressure and high resting pulse. I told her about the joint pain and stiffness, but she said she was not worried about that and we were going to treat my BP first and go from there.

By March, I was getting worse. More joints were affected and the pain and stiffness were worse, at this point I could not button buttons or open my pop top shampoo bottle without assistance. At this point she decided to run the arthritis panel.
My SED rate, CRP,  and Strep titers were all elevated and continue to be elevated although the strep titers were going down last time blood work was done. I was Neg for ANA and RF was 11 (over 13 considered high on this particular lab). Had blood work done in March, May, and July. I have not had any done since I have had Prednisone.

PCP sent me to RD and he said we all have some inflammation, you have rheumatism and should lose weight and exercise. (I have lost 38 pounds and can't exercise for the pain)
PCP also sent me to cardiologist because I had abnormal EKG and I went and did a echocardiogram and stress test and they said everythig looked fine (even though my BP got so high during the stress test I passed out)
Went back to PCP and she told me there was nothing she could do, I should find another Dr.

After several recommendations from friends and coworkers I got a new PCP and he is the one who put me on the Pred taper. He is pretty sure it is autoimmune, but nothing jumps out at him as far as which one.

In the mean time, I continue to get worse, I am now having painful muscle spasms in my feet, legs, hands, and back, it is like they contract and I can not get them to stop for a few seconds to a few minutes. Some mornings my feet and ankles are so bad I can barely walk, other mornings, it is my hands and wrists, and sometimes my knees. I've had multiple falls, and one led to a concussion.

One thing I noticed is when I was on the 20 mg of Pred and feeling better, my BP was way down, seems like it is affected by the pain and inflammation. My balance was also better and I could even exercise a bit. When I tapered to 10 I was ok for a few days but started feeling fatigued and achy again, and now on 5 mg it is like I am not taking anything.
Yes high pain levels effect blood pressure. But wow yours sounds like it gets really high. Thanks Milly. I just sit here so depressed because I feel helpless and hopeless. When I first got sick, I looked up my symptoms online and RA just keeps popping up everywhere. I had convinced myself it was RA between my symptoms and the fact that my mom's sister and my grandmother (mom's mom) both have RA, so there is a family link too.  I thought surely there'd be a Dx by now. I will take this to my Dr on the 22 although I have given him something similar before as I had written out my history and had copies of all of my labs when I saw him the first visit. I also gave the same to the Rheumy, but I doubt he even read it since he didn't even do a physical exam on me.  Frustrating. It does not hurt to remind them. But this is a more updated profile. As time goes on we gain more history. I am glad you have found this forum. I went threw this time alone that you are going threw now. Wish i had known all of you then. Some docs want to wait for more swelling to give an RA dx. They still know in there head that they think you have it. But yes remind the RD. He sees so many patients I do not expect them to remember everything i told them last time. Also remind him of your family history. It is deppressing. I even started getting dizzy and vertigo alot. Then i got spastic colon the sametime my bloodwork came in positive and i had no moisture left in my body. I slept nearly twenty four hours around the clock by this time. I had given up when i should not have. Jenni - someone posted the stats that it takes a woman on average something like 7 years to be diagnosed with autoimmune diseases, men on the first visit.  We blew through 0,000 in insurance money in four year (which is a hefty amount of out-of-pocket for us) until finding a real doctor.  I would make a trip down to your local public health facility.  I always have an abnormal pap tested again at public health before making any decisions.  And rich people want to defund public health.  Perhaps we could use that money to train doctors to diagnose.  Good luck.  There are public health facilities if you meet the financial criteria. If you don't have enough clinical evidence(lab tests, X-Rays, and visible stuff) and history of symptoms to confirm RA, you might need to consider something else.

The only advice I have is to keep good records and persist until you have a diagnosis and an action plan. I still don't have a concrete diagnosis going on close to a year now, but I do have an action plan for treating my symptoms and it's working-that's really the most important thing because it confirms a tentative diagnosis and it's alleviating some of my suffering. Don't give up.
;I'm so sorry you are going through this.  Putting a name to it is not important,  but being treated is essential.  I have been sero-negative for many years and was diagnosed way back then by examination and family history of RA along with swollen joints and stiffness and pain.  I suggest you tell this doctor you want xrays done of your hands before your benefits run out.  Also giving prednisone is one of the ways a doctor can tell if something is going on.  When you feel better right away it's almost always an indication of inflammatory arthritis of some kind.   Keep at it, don't give up. Jenni... to you sweetie and dont you dare give up! We are all here to help hold you up during bad times OK? Thanks guys, I feel better today although I am flaring worse, and have very swollen hands/wrists today, but  just feeling mentally better helps a lot with dealing with the physical pain. I took it easy last night and got some R & R. I am mentally drained, and I needed the rest.  

Hello,

 

Has anyone mentioned fibromyalgia? Or placing you Cymbalta?  Maybe this is something you can bring up?  Is it a burning pain, muscle pain, or joint pain?  Maybe a medication for nerve pain and inflammation?  A lot of people have help with Cymbalta.  Talking of giving up makes me think you are possibly depressed and who can blame you or any of us with chronic pain, for that matter.

Hopefully losing weight as suggested by the doctor in conjunction with your antiinflammatory medications will bring relief to you. by the way, congratulation on the 40 pounds you have lost.  That is a huge accomplishment, a lot of weight, just keep plugging away at the weight, little by little.  I would ask about the cymbalta also.  Not sure how you feel about taking meds to help the mood but it is either that or naturally control mood with exercise and you are in too much pain to exercise.

 

I no longer have my daughter but the one thing I learned from my emotionally painful life experience is you have to take care of you first in order to be a good mom to your kids.  it is the opposite of what we have been taught.  we are taught to put our kids first and that may be true in some areas of life like a manicure/pedicure versus a new pair of shoes for a child, but when it comes to your overall health, mental, and well being you have to take care of you first or there will be no you to care for the kids.  There will always be bills, don't blame yourself for the bills.  Please do look into other ways to get support financially, ask the doctors about financial programs for some of the meds.  Montel Williams is a part of a program that will help with meds too.  I guess I take that attitude because it is what I have done. I am swamped in medical bills, co-pays, deductibles, multiple hospital stays, medications, etc.  I will problably have to file bankruptcy.  i hope it never gets to that and i can work something out with them but my health is all I am thinking of right now.

 

 

good luck to you.  hang in there.

 

S-- 

I am pretty sure I am not depressed, I have a history of clinical depression, and am  a Senior studying in the clinical psychology field, so I know what to look for symptom wise.  It is more frustration and irritation at the money thing and not getting any treatment that makes me feel better. I could care less about a dx but not giving me meds that could possible help me is frustrating.   We have been the people with money issues before, and finally got on our feet and things were looking great, and  the past couple of years have been really good financially speaking, but this year has been a real issue. I am thinking it is more than just Dr bills (I mean we do have a financial crisis going on and daycare, food,  gas, and utility bills have all gone up this year), but I know the Dr bills contribute to the money shortage, I just don't think they caused it entirely. Hubby and I are not seeing eye to eye on that issue. Hubby just graduated with his PhD and has applied for a job, I sure hope he gets it becaue our income will triple (if I keep working), but he has also said I could quit working and finish my degree full time and since I want to go to grad school that would be ideal. I would just like to get whatever this mess is that is torturing me under control before too much longer.

Two Drs did an exam/test for Fibro, they both decided it was not fibro, the newest Dr has not "tested" me for it but does have my records from the other Drs and that might be why. My back and neck have been an issue lately and this is in addition to the other joints, and that has me worried a bit. My back is excruciating, never felt such pain before. Muscle relaxers did not help at all.
Only think I can say to you is Don't you dare give up on yourself! fight and fight and fight some more, Pick your head up and say tomorrow will be a better day!
You have so many here to support you so when you fell down , look to your friends here !

Have you ever been tested for Lyme Disease. It can start with flu like symptoms and Lyme can effect all parts of the body and it can mimic a lot of diseases (arthritis, heart disease, neverous system disorders even mental disorders). Ask for a Lyme test. I am not sure what area of the country you are from, but it is very common in a lot of areas. I was DX with Lyme first and the Lyme triggered my RA. Laurie, you may still have only Lymes.

Have they checked your thyroid?  It can cause joint ache, fatigue, and many of the other symptoms.  My rheumy caught mine.  A simple TSH lab draw.  Chin up!

Okay, then you know what signs to look for.  No one would blame you if you were depressed.  It sounds like you have a lot to deal with.  I don't think you are supposed to be in pain.  Pain is our body's way of letting us know something is not right.  Maybe exercising isn't the best thing to do since you have unexplained back pain and neck pain.  It sounds like your doctors are thoroughly searching for answers.  I am where you are right now financially.  That is what happens for a lot of people when there is a chronic illness.  Most people are hardworking honest people who want to pay their bills but with no fault of their own they developed an illness and can no longer pay because the cost of health care is just more than the average person can handle.  Medical costs bankrupt people everyday unfortunately.  I certainly understand the increased pain with the prednisone taper.  I am there right now.  It may be that you will need to go back on the prednisone at a higher dose until the doctors can get to the bottom of this unexplained pain condition.  Maybe this is something worth mentioning to the docs.

I certainly wish you the best and hope you find relief soon.  take care.

S-- 

I have had my thyroid tested and a Lyme test. Both came back normal. Also have been tested for Fibromyalgia (by 2 different Dr.s), AS, Diabetes, and Lupus, all negative. 

My RA test came back positive as well as sedrate levels matching for RA. Sometimes you can get Lyme Arthritis and it can go away with treatment, mine is definitely RA, unfortunately for me. I have Arthritis in my family with my mom and several Aunts suffering from the disease.

Much hugs to you, Jenn! Hope your next appt is much more productive.
Copyright ArthritisInsight.com