I really need to talk to someone because I'm so terrified right now I can hardly stop shaking enough to type and I can't stop crying.
I think I have rheumatoid arthritis but my doctor told me I'll have to wait ages to see a rheumatologist and I'm scared. I'm 32 and I have a 9 mnth old baby boy and I can hardly function from the terror I feel inside. I've no one to talk to about this - no one understands how scared I am.
I had wrist pain on off during pregnancy - it jumped between both wrists - they felt stiff and inflexable - not hot or swollen - then when pain eased off they cracked and popped and felt kind of 'loose'.
I finished breastfeeding at the end of may and 2 weeks later my left wrist was painful again - it lasted 2-3 days. Then it jumped to my right shoulder (agony to move) same for 2-3 days, then the left one.
since then its been wrists, elbows, knees, shoulders, balls of feet.
Also sometimes feel as if i've got chills an also have an itchy throat sometimes. I also get pain in coccyx area.
Doc said I have weak positive for rheumatoid factor and low white cell count but normal esr and told me to "go for a nice walk!".
I can't kneel down to play with my son or change him - I'm terrified -
during this I had such a sore head one day I was taken into hospital for ct scan and lumbar puncture (clear) it only lasted 2 days.
I went to see a private rheumatologist who said "who knows" wait and see - it might be rheumatoid arthritis it might not be". He did no bloods.
I am going out of my mind - doc wants me on diazipam! no way.
Some folk say it can't be ra if there's no swelling or heat but everything else seems to point at it - please can someone reply to me because I'm so scared and I have no one to talk to about this and it's the worst thing that's ever happened to me - I just want to look after my baby and I'm frighted that my bones are rotting away and that I'm headed for a wheelchair - I've not been out for nearly 2 weeks - knees are sore and now feet too - please reply anything.
thank you so much for reading
lv Julie
Hi Julie,
First I'd like to welcome you here even though I'm sure you'd rather not be here. When is your app't to see the rheumatologist? If it's months away why not see if your family doctor can give you something to help the pain. Let your doctor know how much pain you're in.
I know when I was first told I had RA I had the same worries you have now. Picturing the wheelchair...deformed hands and feet..being sore all the time..etc. Believe me though, it does get better. Once you get on the right drugs. There really isn't much I can say to make you stop worrying...you will worry for a while (We've all been there)but just remember it does get better. I wish I could say or do something to help you. Just know that there are a lot of nice ppl here that can help answer some of your questions and hopefully help reduce some of the fears your have.
Kelly
Dear Julie
So sorry you are so afraid.I am too. No dx. yet.But similair symptoms.
Do you have any help with your baby?It's hard being a new mom and feeling this way.I am a mom of 2 girls...19 and 14.Both have medical problems.The youngests is life threatening.
When you are sick it is very hard to be there for them whether they are sick or just need a diaper change.especially when your srists hurt.I would get another opinion for sure.Maybe you can get a brace for those wrists when they are hurting the most.I have one for my right hand and thumb but also need one for my left hand that is now hurting just as bad.
I wish I could help you with your baby.I LOVE babies.
Take care
Sheila
Hi Julie
First let me say welcome. I'm quite new here, myself, but have found the people here so warm and compassionate.
It's understandable you are terrified. Here you are with a baby, wanting to focus on all the wonderful new changes in your life, and your body is going kaput on you. The stress of a baby is alot; it must feel overwhelming to add this to it.
I can't say whether or not you have RA. There are quite a few forms of arthritis. No matter what kind it is, the rheumatologist is who you should see. I think it's rotten you went to a private doc and that's all he said. Waiting sucks. I imagine the National health is similar to the military system I use here in the States.
In the meantime-arm yourself with knowledge. This way when you do see the doc, you'll know what you are talking about. Don't feel ashamed or weak if you need to take meds to help cope for a little bit. Pain affects so much more than our bodies. Fear, depression, anxiety-these always make my pain worse.
Enjoy long soaks with some eucalytus and lavender essential oils. Take advantage when baby's asleep to pamper yourself. It may mean letting the house go a bit, but so what. I have found cherry juice helpful. I drink 2 or so glasses a day. Paracetemol is good for minor pain relief and won't upset your stomach like ibuprofen. I also like to do yoga, and practice breathing exercises. Sometimes, just calming myself down a bit helps the pain.
You say you had a spinal tap. I had one last month and still have pain in my lower back, legs and hips from that. Plus mad headaches. Doc says that can take a few months to go away.Continue to go to hospital if you need it. The squeaky wheel gets the grease! This is your body, your life, and your family. Don't let anyone make you feel stupid if it turns out not to be a "true" emergency.
I know alot sounds easier said than done. Visit here often, remember you are NOT alone! These people are wonderful.
Big, big
Cheryl
First, let me say it's great that your lumbar puncture was clear. I've had plenty (I also have MS) and I'll tell you this. Sometimes, after the puncture, the puncture hole does not close naturally. This causes unbelievable head pain, which is stange because the headache immediately disappears when you lie flat. It hurts only when you're sitting or standing up. It's because the spinal fluid is leaking, and not cushioning your brain properly. Your brain has no cushion, therefore it's bouncing against your skull--simplistic description, but enough said. This can be fixed easily and instantly with a procedure called an epidural blood patch, which basically uses your own blood to create closure at the opening. Just keep that in mind if it happens to you, and don't allow this pain to go on for more than a day or two. It's unnecessary pain. Some docs will suggest waiting a week or two, to allow the opening to heal on its own, before going in for this patch. Unacceptable!
Now for your fear. Omigod, how this fear reminds me of myself some months ago. I had positive boodwork, so it was easier and quicker for a diagnosis. But I was terrified by the pain. Multiply my pain by yours--no good doctor responses, and a tiny baby. I would have freaked out, too! I cannot believe the rheumy's "wait and see" response. Can you see another rheumy? He obviously doesn't have a clue. No bloodwork? What???
Is your GP giving you nothing for the pain? What about prednisone for the inflammation? At the very least, he could give you a medrol pack of prednisone (six-day quick cure) and he'd then see that it's inflammation, if the pred works. Perhaps then he'll give you a prescription for pred that you can take for the time between now and when they diagnose you. It's not a narcotic that makes you loopy. This would allow you to function, at least--hopefully without as much pain. It's not something you want to take long-term, but surely something for the interim. You may have to be assertive--straight-up ask him for it. Get your nerve up and make noise until they get you out of pain! You must--for yourself and for your baby.
Pleas keep us informed. You now have a bunch of people who want to mother you. We'll be here when on one else is.
Hi Julie,
Welcome!! I'm really sorry.....I can't imagine being in your situation and being told to go for a "nice walk".
It sounds very much like RA or some other inflamatory arthritis. I would think given your symptoms and positive (even if it's a low one) RF and low WBC, a diagnosis should have been made. My RF was a low positive, but taken with my symptoms the rheumy told me dx was made easy.
Sara is right, my husband has a friend that is a rheumy and she called me when we were having trouble getting a dx on my son. She told me you must go in insisting and demanding. Be very direct with your questions, "Dr, why am I not being diagnosed? with all this joint pain, a positive RF and low WBC I don't understand what the hold up is...please tell me."
I'm so glad you found our group, as you can see from reading the posts, it's a wonderful place. There are so many great people with wonderful advice (Cheryl's long soak sounds great). There is always someone here that has been through the same thing and can help you along . So come here often, get to know us, let us get to know you.......it's a good feeling to know there are always some dear friends a moment away.
First things first try to stop panicing. I know its scary but even if it is RA it is treatable. The conditon is not curable but it is possible to feel fine with the right medication. We are lucky because we have so many more options today than what people had before. Don't worry just yet, your doc should do everything possible to stop any joint/bone damage and like my rhemuatoloist said he aims to keep mine exactly the same for the next ten years the way they are right now. It is possible. My suggestion to you would be to find another rheumatologist if possible. From what I've read on here specialist are normally either very supportive and knowledgable or a waste of space with not much to offer. Perhaps because your swelling isn't as obvious, he doesn't want to make a diagnosis just yet but then again he should of arranged for some bloods to be done, after all he is the specialist not your doctor. It may be the case that you have something viral. When I first started to become aching, my rheumatologist put me on a short course of Prednislone. If the pain goes then great it was viral but unfortunatly mine came back. If you go on the Preds then you will have pain relief within 24 hours of taking them. They should not be taken over a long period of time though because of the side effects involved. Either way keep positive and confident. I know its scary and upsetting but stressing yourself out will only make you feel worse. There is definatly hope. Everyone else on the forum is probably getting bored of me saying it but I'm 20 and a gymnast. I was just in the gym this morning doing back flips and somersaults and all sorts, my pain is minimal if there at all. Keep your chin up and aim to find a good specialist who will diagnose you correctly and then start agressive treatment if needed. Try to stay calm and happy for your little one. It will get better and its not the end of the world, although you may feel that now. It may not even be RA but if it is a bet in a few months time when its under control and you feel happier in yourself you will be on this forum giving advice to other scared newcomers. I hope it all works out for you. Keep us posted. Jenna x Hello Julie; Welcome to our family. I know how scared you are...I too was young and started having problems right after the birth of my second child. That was 11 years ago. I know how scary it all can be. Know that we are here to support you in anyway we can. You'll find great first hand advice here as well as some very good friendships. Our friends and family are wonderful, but none of them truely understand what we face everyday. These ladies....and a few good men here will be a source of support you'll soon come to count on daily. Hang in there Julie. I know it's hard to hear now...but it does get easier. We'll help you adjust. Don't panic. We look forward to getting to know you. Lovie WELCOME JULIE!!!!!!!
I am sorry for all you are going through. It is daunting and frightening. I agree with xjeenax, you need to find another rd to see. I hope you have good family support because it will help alot with the baby. You need to make sure you are getting rest and I know the next part is hard, but you need to avoid stress. Stress is number one on the hit list for aggravating the symptoms. I also agree that maybe you may need something to help you relax, now that you are not breastfeeding. It will help . I will keep you in my thoughts and hope that you are able to get into a good rd sooner than latter take care. meme JULIE, I KNOW HOW UPSETTING IT CAN BE WHEN YOU FEEL HORRIBLE AND DEPRESSED AND THE DOCTORS ARE NOT HELPING YOU. AND ADDING THE FACT THAT YOU ARE A NEW MOTHER ON TOP OF THAT WITH HORMONES OUT OF CONTROL. TAKE A DEEP BREATH!! YOU HAVE FOUND A NEW HOME WITH PEOPLE WHO UNDERSTAND AND HAVE BEEN WHERE YOU ARE. WE WILL BE YOUR SUPPORT SYSTEM AND WE CARE! I MYSELF HAD VERY LITTLE SWELLING AND WAS NEGATIVE FOR RF (RHEUMATOID FACTOR). IT WAS MRI'S OF MY HANDS SHOWING EROSION WHICH GOT ME MY DIAGNOSIS. YOU NEED A NEW RHEUMY AND FAST! MD'S HERE IN THE US CAN GET A SOONER APPT FOR YOU; HOPE IT'S THE SAME IN THE UK. AS OTHERS HAVE STATED, THE MEDROL PACK OF STEROIDS CAN GIVE YOU IMMEDIATE RELIEF AND IF YOU ARE RESPONSIVE...IT PROBABLY IS INFLAMMATORY DISORDER OF SOME SORT. IN MY CASE GOING TO AN MD WAS WORTHLESS AND CAUSED ME YEARS OF UNNECESSARY PAIN AND DAMAGE. DO YOU HAVE ANY FAMILY THAT CAN HELP YOU DURING THIS TIME?? EXPLAIN WHAT IS HAPPENING TO YOU TO YOUR FAMILY. READ EVERYTHING YOU CAN ABOUT RA AND GET EDUCATED. KNOWLEDGE IS POWER WHEN YOU TALK WITH THESE DOCTORS. I PRAY YOU GET TO A RHEUMY QUICKLY AND GET SOME MEDROL PACK OR PREDNISONE FROM YOUR MD TO HELP IMMEDIATELY WITH THE PAIN. WE'RE HERE FOR YOU DEAR. KEEP US POSTED ON YOUR PROGRESS. WE CARE ABOUT YOU AND UNDERSTAND. BIG HUGS TO YOU DEAR!!
Hi julie, Welcome to the board. I kinda understand what you are going thru. I have a 9 month old son & a 7 yr old daughter. I am not on any good meds for RA, because hubby lost his job back in March & with that we lost our insurance. He now has another job, BUT we had to wait 90 days before we could get insurance thru that job. Which our insurance will be effective 8/01/05. Not much longer to wait!! I am on Mobic & Prednisone; Without Prednisone I would not be able to get out of the bed to tend to my son. Mobic just helps me with my neck & back pain. But the prednisone helps with all my stiff body parts, like my fingers, wrists, toes, feet knees, shoulders, elbows, and hips. I will soon have to tend to my son by myself again thru the day. I am kinda scared. I have been having the help of my daughter to tend to Andrew when hubby is not home. My daughter will be back in school in another week. So, that will just leave me and Andrew all alone until 2:30pm. May be I can get back into the swing of tend to him myself again. I know it will be hard, but I am going to have to. I just hate changing his diapers, not because they stinky stinky, but because he always kicks me in my hands, wrists or fingers. It is so painful! But I work thru it. I hope you can take some prednisone until you get to a rheumy. It will really help you. It will help you enough to get you thru a day probably. I would rather be able to tend to Andrew just enough to get me thru until hubby gets home, then to not be able to tend to him at all. which is what the prednisone is doing now. Letting me tend to him long enough until hubby gets home. When I get on better meds maybe I can tend to him like I use to when he was first born, just me and only me! The best way to make a boy a mommy's boy...lol. We will have no daddy's boy in this house...LMAO!!
Hope you get to feeling better soon. June Julie, Reading your post brought back many memories of my first months dealing with this. My pain started during pregnancy as well, (my 2nd pregnancy), and was mostly finger and wrist pain. But within 6 months of my daughter being born I had a major flare that knocked me off my feet and put me in bed for 4 weeks....joint pain in knees, elbows, hands, feet etc. I had chills too, and my strongest memory of that time was thinking I was going crazy. You see all these doctors and everyone's saying it looks like R.A. but your joints don't look swollen and all I am thinking is I don't care how they bloody look, they hurt like hell.
TAKE CARE....love and hugs,
Becky Don't panic. Unfortunately (as I have discovered to my cost) doctors in UK like the wait and see approach. I have been to two Rheumatologists and been told by them both to wait...... I had high ESR low white cells but no RF. I am classed as non specific joint pain. Keep at it though. There is something going on so you can't give up. Go to your GP and ask for anti-inflammatories and pain killers and if they don't work then go back and ask for different ones. Don't suffer in silence. On the plus side, my auntie has had RA since she was 20 and has four children and a very active life-style, it's a case of getting the drugs right for most people. There are plenty of people on this board with great words of wisdom. So keep logging in......I hope you feel better soon. Hi Julie,
Hi Julie, Just wanted to welcome you to our group. Really cant top the wonderful advice already given you. But know that we are hear for you and you can come back here as much as you want to. RA is a scary thought but we know first hand that you can live with it, or any form of arthritis you may have. As long as you have the support you need, and a good Rheumatologist you can still have and enjoy your life. The road to an answer may be long and tough, but in the end all your struggles will be worth it, cuz you will be wiser and hopefully stronger in your determination not to let the disease control you. Take care Shawnie
Welcome, well it sounds like the first thing you need to do is have a
bubble bath and eat some bonbons. Did the Rhuemy ask you if
anyone in your family has RA? Did he check you for fibro? I
get the feeling that you need to see another RD. It's really
common for new moms to get carpal tunnel because of lifting up babies
little bums to change and wipe. So
if you can use some kind of wrist splints it would help your wrists a
great deal. There is definately something going on with you and
you need to be persistent with your doc. Also ask your family if
there is any history.
Take care, and don't forget the bubble bath.
Mina
Hang in there, you are in the right place now. I am new to this board but I sure do wish I knew about it when I first starting having symptoms of RA. You can get so much info here and everyone knows what you are going thru. Just reading these posts has helped me, made me know I wasn't all alone in this. So many of us have been thru what you are going thru and it's hard! But, it does get better. It took me a long time to get diagnosed, as well as alot of the others here. you do have to be forceful with the doctors, and educate yourself. You are not alone in this. My heart goes out to you. Hang in there, it will get better.
Linda
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