Please help! I feel so humilated and hopeless :( | Arthritis Information

 

I went to a Dr today because this is getting worse, and worse. I have pain on both sides of the body in almost all joints of my hands, wrists, ankles, toes. I have been running a non stop low grade fever of 99.9. All of this has been going on since the 20th of last month. I finally got an appt with an Rheum that will take my insurance but it is for the end of June :(

I was in the ER for this two weeks ago because I can't take the pain and the swelling and stiffness in my joints.

So during my appt with this "Doctor" today, he told me that my SED rate was 10 and that it was perfectly normal and that I do not have any inflammatory disease, or arthritis. Especially RA. He then belittled me by telling me that it is most likely in my head because stress will cause these things. I told him I haven't been stressed out and he said he still believes it's in my head. If I had anything wrong with me my sed rate would be up. And that there is no way that I could be having pain like this. I told him about the fevers and the swelling and he said that it wasn't a true fever because it wasn't high enough.

I feel so hopeless, embarassed, and belittled by this Dr. I know what is happening to my body and DAMNIT it is NOT in my head!!!!!! But no matter what I told him he still said it was impossible for me to be in pain and have swelling of all my joints with a normal SED rate. He said that the Lupus test that they did, and the SED rate were normal which rules out all autoimmune diseases for me.

I am crying my eyes out right now, so hopeless and scared and frightened that the Rheum I go to see at the end of June is going to treat me like this.

I don't know what to do. Can you have RA or anything that attacks the joints and gives constant fevers and have a normal SED rate?

Thanks :(
Yes, yes yes!  '

Hi there, I am so sorry a Dr could treat you this way. It brought back a horrible memory. When I first had symptoms I went to see my then Dr as I felt my shin bones were going to pop out through my skin and I hurt everywhere. My Dr told me I was stressed and it was all in my mind. i went back to see him 3 or 4 times before he took a blood test and also told me my SED rate was low so it wasnt RA...........after battling along for a while I changed my doctor and was referred to a rheumy. Within 6 weeks I was diagnosed RA and started treatment. Im sero negative RA although xrays show the damage. Please dont be put off by one Doctor, go see your rheumy and let him decide, if you still arent happy then seek another opinion.

I'm so sorry that happened, but please don't think your rheum visit will go the same way.  I agree to call and see if they have cancellations.

My daughter gets lowgrade fevers occasionally, and I want you to know that she feels the WORST during the those times.  99.3 - 99.9 and she is miserable.  Miserable.  If it ever gets up higher, I mean even up to 102 or 103, she feels better!  It is so weird, I'll think her fever is gone because she is dancing around, but it will actually be worse.
Actually the c-reactive protein test is a much better indicator of inflammation in the body than your sed rate, although both should be performed regularly. Sed rate should be 10, c-reactive protein 5.

RA factor means very little when you realise that a good chunk of us severe raging RAer's don't have one at all...meaning we are seronegative and many people with an RF don't have RA at all.

Get someone, your GP, someone to perform a c-reactive protein on you and see what it shows.

I presume you are fairly new to this whole mad RA deal so I will throw down a few things that are worth knowing as this journey is just so, so confusing at the start.

Oh, sorry, I am just over three years into this process post dx. They still have not found a medication to stabilize my RA. I have posted a lot in the past but have recently been doing my second round of Rituxan infusions and have kind of been off the board for a while.

Here are some basic things it's good for a newbie to know:

*If you think something is WRONG, something is WRONG. Keep looking for answers, until you are told something that makes sense. I went eight years knowing there was something wrong until they found the RA. PERSIST.
*If your doctors are being hopeless, change them. You must have a GP and RD you can work with on a daily basis, such is the nature of this disease. Keep changing them, until you get two of them with half a brain who can also communicate with you.
*BE PROACTIVE. BE ASSERTIVE.
*Expect it to take you a long time to learn how to manage this thing. My opinion is that it takes about five years to work through all one needs to get to a place of manageability.
*Lower your expectations about the meds and their miraculousness etc. If you expect to just have a med work and all is well forever...that probably won't happen so you will be disappointed a lot.
*Be proactive. Your disease. Your in change. You run the show.
*READ. RESEARCH. LEARN. KNOWLEDGE IS POWER. KEEP READING AND RESEARCHING UNTIL YOU KNOW MORE THAN BOTH YOUR DOCTORS ABOUT YOU.
*Get on some probiotics...I have not heard of anyone they have not helped somehow. Adding gut immunity balance into this thing that is immunity related can't harm.
*Listen to your instincts about what is happening in your body.
*Think holistic. This has to utilize not just standard medications but a whole wide variety of anything that may help with the situation, from traditional meds to massage to probiotics to exercise to acupuncture. Try and do everything.
* Their have been some recent studies that show journal writing about past traumatic events, helped improve people's immune systems who had RA. If you are someone who can journal, do so, it can only help on many, many levels.
*Keep your mind positive. The hardship of this disease is the easiness in which we can bury ourselves in the constant, negativity of it all. It's not easy to think outside that. Do affirmations, say to yourself, "I want to be strong and healthy." Read every book on healing the body you can. I recommend to start, Louise Hay's - "Heal Your Body" and "The Power Is Within You."
*Move. MOVE. MOVE. MOVE. This is NOT easy. Your body wants to do the opposite. Not too much. My goal at the moment is walking to my letterbox and back as many times a week as I can. That is huge for me. Just try and keep that body moving, gently. Any movement that is gentle but extending you past the norm is good.
*Do as much basic self care as possible. Decent food, enough sleep. Those 'basics' can make a huge difference to keeping you balancing and sane in the face of chronic disease.
*Find the joy around you. I have a beautiful six year old daughter so I don't need to look far but keep finding the joy, find the beauty...don't let this thing grab you by the feet and drag you into the dark abyss.
*NEVER SURRENDER!. Yes, you will feel like it sometimes.

So to begin, I think you need a c0reactive protein to see what that is showing and some doctor's who are making some kind of sense because if you know there is something wrong, there is.

Sorry, I didn't meant to rabbit on, just felt I should write all that...that it may help somehow.

Take care.

Hang in there, honey!

Please don't worry about your Rheumy appointment going the same way. He is far more qualified with arthritic conditions than your doctor. Just be honest with him/her tell them how much pain you really are experiencing. They don't only use blood results to make a diagnosis.

I started having symptoms post-partum, but mostly fatigue and low fevers at first.  I was a regular at my GP until I found my way to a RD in October.  When he examined me, he was sure I had a connective tissue problem.  When I went back a week later, he said there was no connective tissue problem because my ESD, CRP, everything was normal.  A month later I noticed I couldn't bend my wrist properly, and by December my wrist was in a huge flare.  By January I had elevated ESD and CRP, even though I felt better overall than I had in October, when I felt horrible, and had just gone through months of having strep and weakness.  You just never know.  Hang in there, there is more to this than bloodwork can say.I agree with everyone here! You need to see a rhuemy and quick. Just forget what that other doctor said. You know your body better than him and if you feel something is wrong, then there is. The way you were treated was horrible! I'm real sorry you've had to deal with that. I wonder what he'd think if he had the pain. Many people have sero neg RA. After you see a rheumatologist and get better treatment you should write a complaint about him. That's so hurtful. I hope you get help soon.Hi Wonderstruck......yes you can have ra without positive blood tests. I have read here on this site of people who do have it. Cordelia gave some excellent advice. Don't let one bad dr spoil the whole bunch. I think you should call ra's office ask them to put you on a list if any one cancels you could get in earlier. My bloodwork comes back "normal" as well.  But on my first visit to the rheuamtologist, she said that it definitely seems like RA, and we're going to treat it as such until proven otherwise.   She was even more confident in the diagnosis when a round of steroids COMPLETELY (but temporarily Oh my, I hope this is the last time you go and see this poor excuse for a doctor. For one thing, pain is what the patient says it is and should be treated accordingly. I'm sure your RD will get to the bottom of this for you. I would report this guy to the medical board.If you have symptoms, you have something. I hope you told them you don't need the bill, it's all in your head  Wonderstruck, must of us...usually fairly early on in the RA medical rollercoaster...have some experience of the medical profession treating us in a humiliating way. One doesn't necessarily fit into their nice neat pigeonholes so they go on the attack leaving the poor patient attacked, stressed out and completely stomped on. What happens is that you learn as a patient to stomp back. You learn the you do know about your body better than anyone and you start to stand up for yourself in this nasty process. Then the doctors realise that they actually have to come up with some intelligent information on your case instead of copping out with "It's all the patients fault." Deep breathes. You will get there. Do keep going until you find doctors who come up to 'your' standards and start actually finding out what on earth is going on with your body. That's their job.

I personally found a couple of things. One, more experienced general practitioners were better able to see 'outside the square' so I chose, not the GP's just out of med school but someone with twenty or so years experience and a few grey hairs. Another good tip is I always believe it is best for your GP to manage pain medication as a patient sees them more regularly than an RD. They also have more time to work through the tedious process of stabilising pain meds. RD's just don't have time to do that on top of everything else.

It just takes time to sort all of this stuff out for yourself as you ride the rollercoaster or RA faster than one would like.


In my area, the GP's usually leave the pain management to the rheumatologist.  The DEA (Drug Enforcement Agency) gets hot and bothered when regular doctors write lots of pain med scripts.  They seem to be a bit more understanding with rheumatologists and other physicians who deal with chronic pain.  I don't blame the doctors - I blame the DEA (and the addicts who abuse the system). I just don't think that RD's are best at pain medication. And pain meds take a while to stabilise and if you aren't due to see your RD for three, four, five months what happens in the meantime when your pain relief regime has gone awry? My GP gets special authorities but she is the one dealing with me week by week. I may not see my RD for  months at a time, he sees me when he wants to work on the next DMARD issue. I am glad we don't have that problem in AU. RD has more focused on the next DMARD they are going to work on than whether your pain is relieved well now. If I waited for my RD to get organised in that area, I'd still be in pain. His focus in my disease management is the 'big picture' of RA management.  ^ Wonderstruck, I have the same problem. My bloods are doing so far nothing to indicate what sort of arthritis I have. It is possible that you can have RA with no CRP or ESR or RF, it is just that your disease is termed 'mild' rather than moderate or severe. Even in the last session I had with my Rheum, he still blamed the fact that I have more pain in more joints and more swelling on the assumption that I must be stressed and depressed. Although I did get a minor victory - after 14 months of seeing him, he did acknowledge that I have arthritis, although we are in a ?RA stage. Rheumys tip toe around diagnosis because they can't afford not to - if they dx the wrong thing it can hold major consequences for them, so they have to be sure.

_popupControl();^ I find that too, Cordy. My Rheumy expects me to put up with the pain and wait around to find a DMARD to treat it, rather than rely on pain meds. I tell you, if my Rheumy had to put up with some of my pain, or the pain that RA can cause, he'd be a wreck. The GPs at my clinic refuse to write scripts for pain meds and addictive meds, so I'll have to wait it out.
Good Lord, who gave that doctor a license to practice?  Unfortunately, even the "C" students get into the medical profession and I think you just saw one of them.  Obviously he got an "F" in bedside manner.  I just wanted to weigh in with another sero-negative RA DX here...  don't stop working toward your DX and your solutions..