l need advice as l cant find help anywhere else.In 1984 l started to get pain in my wrists and within a short while the pain had spread to all my body and my hands.l have morning stiffness, burning pain in most of my body and terrible fatigue.They day l went to my doc l had to have my daughter help me walk there because of the pain and he told me l had RA and sent me away with no advice or tests to be done ,just to take painkillers.After a few yrs l moved to a doc nearer home and he wanted test to see if it was RA.The appointment was made for blood tests etc and Xrays on my hands but thet came back negative.l have suffered yrs of pain,fatigue,l cant work,lm getting weaker to the point now l dont go out much as walking is too tiring and the next day lm worse with pain in joints.From the onset lv had flare ups and take to my bed because lm in so much pain and feel so ill.l find if l sit for a while l get stiff and if l move/walk l get sore joints and fatigue.A few ys ago my doc tells me it must be ME(because of the fatigue) and to take antidepressants for it(l didnt want to but l tried it anyway and it did nothing for the pain,).l take painkillers from the chemist but even though its got to the point l can not use my hands much because of the pain my doc says its cant be RA as my blood tests all those yrs ago was negative and there is no bone changes.l have to have my husband help me now for many household jobs, l can hardly write or hold a book as its too apinful and we feel in the future ll be in a wheel chair..can anyone give me advice about RA as lm conviced this is what lv got.
It sounds as though it is RA - sounds exactly like it, in fact. I'm sero-You doctor makes me crazy.Is he a arthritis specialist? You can have RA and not have the RA factor in your blood work. I have RA for 25 years and it only showed in my blood the last three years. My first doctor was like yours and said I was to young to have arthritis and put me on 9 advil a day and a large amount of prednisone. The doc almost killed me. In the mean time the RA was destroying my joints.Seeing a specialist made a word of difference.
You might want to think about seeing another doctor. Could you have fibromyalgia? There is no bloodwork for that but a good rummy would know if you did.
My heart goes out to you. Good luck
Please find a rheumatologist. Even if you have to have someone drive you farther from your home to see one. I really hate that they would send you on your way with painkillers. That just sounds so negligent.Sorry to say your story is (unfortunatly) all too familiar. Many of us go on undiagnosed or misdiagnosed and suffer for it. It is also unfortunate that you were told that it was just in your head. I also did some time on antidepressants only to find that it was time wasted because I spent months dealing with pain and fatigue despite the medication. There are apparently alot of doctors who still have a lot to learn when it comes to diagnosing RA and related illnesses. I guess I just have to vent a little on your behalf. It just makes me angry when I hear stories like yours and the thing is, I pretty much meet a new person every day who has been suffering while their doctors danced around the problem.
Hope I havent frightened you away with my ranting!
here are the 2 links : http://www.rdlinc.com/pdf/Article_u_.pdf http://www.rdlinc.com/pdf/Anti-CCP%20article.pdf Hope your pain subside, and you find some peace, and stay in touch we all here have various problems with RA and other A's we discuss . Its way past time for you to see a rheumatologist. It took me 8 years to get diagnosed and I am still sero-negative. At the very least ask for some prednisone to tide you over till you can see a specialist, it will help with the pain and also just generally make you feel better. You may have ME (myalgic encephalitis) but It sounds like you definitely have RA and its time to treat that as its own entity. Get a second opinion (even a third or fourth), keep going until you get some joy somewhere. Hope you have a pain free day. ((((JACKIE)))) Honey I want to send some warm, Pain free hugs your way. You may or may not have RA. It could be another form of AUTO IMMUNE Disease. But...IT DOES sound like SERO-Negative RA. I am, and my joints show little to no damage....even though I am moderate to Severe to RA. You will not see much in the way of Inflammation. YET...My joints do have some damage...that has come over time...and SLOWLY. I know in the UK...procedures for finding and obtaining appts to Doctors is difficult. BUT DO NOT TAKE NO FOR AN ANSWER! This is your life and NO, I MEAN NO doctor has a right to write you off! I had a doctor tell my mother when I had pain in my chest, it was all in my head and that I was hyper-ventalating to make myself pass out. After 5 days of fainting and chest pain, my mother took me back to the hospital...and the NEW doctor found out I had a MAJOR heart defect...and if I had not come back to the hospital...I would have gotten sicker and died. NEVER TAKE NO and it is all in your head for an answer. FIGHT IT! We are here if you need any help and or suggestions. IF it hurts and you are not well...SOMEONE has to listen. Find a GOOD rheumatologist in the UK...I don't care if it takes 3 month to get in...And it may...GO...don't wait...Get your current doctor to get you some Predisone...it will help...and if HE or SHE won't listen to you...LEAVE with a quickness! I pray for better days for you and your family. Heart felt hugs! Roblyn Red Rose...I would print off the criteria for RA and take it too him. Because, evidently, he doen't know what the heck he is talking about. IT IS NOT IN YOUR HEAD! RA that is SERO-Negative will not show in the blood. He must not only go on the blood tests you must have but on the physical symptoms as well. Don't you give up...somebody has to hear your pain and do what must be done to get you out of it. Naproxian alone won't help... you need at least a small dose of Predinsone. MAN...that is why I hate going to the doctor. Red Rose...Are you seeing a Specialist when you go or just a regular doctor? You need to see a person that deal in Auto-Immune Diseases. Regular Doctors dont' always pick up on these things. I guess maybe I am a PAIN to many doctor's because if I feel they aren't helping me or I am being Shafted...I move on. Your symptoms are serious enough, that someone should be seeing the RED FLAGS by now. Some one should be saying...what we are giving her is not working...so we have got to do something or at least LISTEN to her symptoms. I will be praying for you to get to a GREAT specialist in the UK that can help you. ROblyn Sorry you still have no answers...good luck on Friday. Hope you start feeling better soon.
Once referred I was given an appointment for the 26th April
I have now been on MTX for (this Sat) 5 weeks, the steroid shot I had has now worn off, hence a few painful joints again, so I saw him again yesterday and he's added Pred at 15mg to be tappered down over six weeks to 10mg. Here in the West Mids, I see a Rheumatology Specialist Nurse every 2 weeks inbetween seeing the RM and your given a phone number directly to them, so if you have any queries etc or your in pain like I was again they get you to see the RM quickly to get sorted. They've setup appointments for me to see the OT and someone else (forgot now)
So redrose, don't be fobbed off, get angry, this is what we here in the Uk pay national insurance for while we are fit and healthy at work, we pay into the system so that when we are ill we can get decent health care. At one point I did consider going private, however I thought sod that, why should I when I have worked all these years and paid my national insurance contributions
So hang in there. Caz *hugs* I hope that you will find your answers quickly. Remember to remain firm and you are your own advocate. If possible have your hubby go with you so that he can back you up. Sometimes if they hear it from someone else that has seen it makes a huge difference. I know it's difficult. But remain strong, and fight for what you know is right in your heart. I'm sure you know from all our responses that it can take a long time to get the right diagnosis. You can have more than one autoimmune disease at the same time too. They keep adding to my list of ailments. It's really important to keep a file of all your medical records. It will help you to get diagnosed more quickly. I keep mine in a large zip lock bag. Every time I see a doctor, specialist or not, I get a copy of the test and report and add it to my file. Everything is in chronological order.Every time you have an appointment with anyone, take the file with you and share it with them.Keep a diary of your problems so you can give a synopsis at each appointment. You are the only one who knows the whole picture. By the time I finally got diagnosed, I had seen a GP, allergist, ear nose and throat doctor, allergist, dentist, orthopedist, and physical therapist. I had been to an emergency care facility where they thought I was having a heart attack that turned out to be nerve involvement from my neck.Good luck. Iknow better days are ahead.
You don't have to hurt as much as you do. There are treatments, and the
sooner you start them, the better chance you have of preventing
permanent damage. DON'T WAIT!!
Good luck!I agree with everyone else that your tests don't have to come back positive as I was recently dx with seronegative RA. I'm also on prednisone but not with much relief so far and I also take plaquenil and that takes about 8 weeks to build up in the system. Don't give up you will find a good RA doc that will get you on a program to help with the pain and stiffness. I was also told by my primary that it was in my head but I kept pestering him till he wanted to get rid of me by sending me to a RA doc to get me out of his hair. Sometimes we have to be a nuisance in order to get the treatment we need.
I never had to do that (small voice). My PCP kept saying, this is arthritis,
and I kept saying, "No," because I couldn't believe it was happening to
me. I need to send my PCP some roses. She's good!hi,just a update something is happing worse to day,lm having problems useingmy arms andhands,[ain really bad sorry trying to type this to tell u...lm getting shock like pains in my arms and hands and fingures difficult to hold things...doc to morrow at 4 30 lm feeling a little frightened now as to what it is.lm trying not to show it so not to worry hubby.will logg on aftr docs,thna u for yr thoughts jThe shock like pains are something many of us get when we are flaring really bad. Try not to be scared. Just get some rest untill your doctors appt. Good luck, we are all here for you!!!I was getting those shock symptoms in the same areas when I was flaring
really bad. I think it is the nerves being pinched in all of that
swelling. I was pretty freaked out, but your doctor should be
able to get your swelling down with some medication, hopefully. I
am feeling a lot better, and my shocks have gone away for the most
part.
I hope you feel better soon. It is so hard when you are in that acute pain.
hi everyone, just got back from doc.l saw a different one this time,he is still dimissing that its RA..l have no bones changes,no redness,no swelling..he says it looks to him as nerve damage.l have to have a fasting blood test on friday morning.lv told him l cant take this anymore,the pain(burning in hands/wrists/elbows/shoulders and sometimes feet) and fatigue is over whelming me now.Hes given me Naproxen to take tonight and says the blood test will take a wk for results.He then told me they may not find out whats wrong and that it could be CFS and all l can take is painkillers and anti-dressants he said.lm not conviced its CFS that so ll have to see what the blood test shows.It took every bit of my energy to get to see him and l must admit he did look worried.l just want to say thank u all for all your kind words of support,its really helping me.JackiexDid he even mention giving you prednisone? Because if he does, and it
helps, then he's not catching what's wrong. If he does, and it doesn't, it's
possible something else is going on. If he doesn't, you don't know any
more than you did. I know prednisone is an evil drug, but to use it one
time, at a fairly high dose (less than 20 mg. did nothing for me), won't kill
you and might help you. I don't understand their reluctance to do
anything. Naproxen doesn't do much for me.
Good luck!hi Fiona, this doc kept asking me if l was depressed and did l want anything for it if l was...l said no im not depressed lm in pain and lm slowly going mad with it.l had completly forgot to ask about predisone (l wrote it down and forgot to put the note in my bag)as it took so much out of me to get to his surgery, and he never offered it but ll make sure l ask for it if Naproxen doesnt work in the the nk day or two..l just want to chop off my hands and arms with the pain.J
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