So many questions

jan1ce
jan1ce Member Posts: 14
edited 8. Sep 2010, 17:57 in Living with Arthritis archive
I just got my diagnosis. I was really surprised. I'm pretty active and this seems to have just suddenly taken over. I hurt from my hips and lower back right down to my ankle now (both sides) and today I am already getting new pains in the soles of my feet and wrists - is this normal to have everything just spreading so much and so fast?

As well, I had breast cancer eight years ago so I am really scared they have the diagnosis wrong - they only Xrayed my left knee since I said that's where the pain was worst. I'm also scared they will do an MRI since I have a huge phobia (well, many) about being enclosed and not being able to see. Could they be wrong? They said the bone was raggedy on the inside edge of my knee - neurotic me thinks maybe the OA is concurrent with other "stuff." It's been good reading other people's fears including the fear that it's really cancer. Thanks for that! :D

I am seeing my GP on Tuesday morning and will ask for a referral. Meanwhile, I need my questions answered about diagnosis and I'm taking some ibuprofen, using an ice pack or heat depending on my mood and was already starting to lose weight. Oh, also when the pain was at its worst a couple of weeks back I had a terrible rash at the back of my knees. The GP said it was coincidental but now I'm not so sure. Could it be heat rash from the inflammation though? Here's another thing - I have no swelling. I mean NONE. Normal?

I'm hoping this is like every other thing on my growing list of ailments (blech - ageing!) - that it's coming out strong but won't dominate my life for too long.

That's all for now but I'll be back with more. FOR SURE! Trying to keep my sense of humour in the meantime.

Comments

  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    Hi Janice, I can only answer one question from my own experience, I have had only minimal swelling in 9/10 years of inflammatory arthritis on the odd occasion. The one time my knee really swelled it turned out that I had torn a ligament and when my hands swelled badly enough to have to have a ring cut off..........well, no one could tell me why it happened and it remains a mystery to this day (7 years ago now).

    You keep your sense of humour, chucky. It's the only thing which keeps us going at times!

    Annie
    xx
  • lavenderlady
    lavenderlady Member Posts: 409
    edited 30. Nov -1, 00:00
    having had so many scans in the past few years my one piece of advice is close your eyes keep them closed while you are inside the scanner listen to music it drowns out the knocking sounds and I've even thought of my christmas list one time , like you I have loads of health problems inc spondelothesis of my lower spine and SMA ( spinal muscular atrophy) they thought it was MS, hence why so many scans over the past 8 or 9 years they keep checking it out, and with chronic degenerative arthritis with practically every joint being affected, having first op later this month, I take 27 tablets every day along with a diabetic injection twice a day, yep hitting 40 am now 49 lifes been going down hill ever since, had a hystrerectomy last Oct they then found out i had changing cells on my cervix which I was adament was removed with just about everything else , if I had left it until my next smear it would have been far advanced, what I'm saying is go by your gut instinct your inner feelings and if in doubt check it out again and again until you feel happy about it , I "just knew" I wanted my cervix removed no idea no explanation thank God I did :shock:
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi Jan1ce and welcome to the forum :D

    there are lots of peeps here who have OA and I'm sure will be along to say hi and maybe answer some of your questions.... or just share their experience of having OA.

    I have PA (psoriatic arthritis) which is one of the sero-negative inflammatory arther's; treatment for this is similar to RA.

    It is alarming at first when you get a diagnoses but your doctor will explain treatments and whether physio or hydrotherapy are options for you in addition to pain meds.

    I'm sorry you've already had a scare with cancer and it's understandable that it's not far from your thoughts..... so it's doubly important to talk this over with your doc so that you can be reassured. :wink:

    It's good you have found the forum..... none of us are experts but have learned a lot with years of having arther! we support each other whenever we can.... and take time to have a laugh too.

    ask as many questions as you like. :wink: there's always someone around to chat to.

    Iris xx
  • jan1ce
    jan1ce Member Posts: 14
    edited 30. Nov -1, 00:00
    annie_mial wrote:
    Hi Janice, I can only answer one question from my own experience, I have had only minimal swelling in 9/10 years of inflammatory arthritis on the odd occasion.

    Thanks, Annie! When I had no swelling I thought well that's good - it's NOT arthritis. Well, darn!
  • jan1ce
    jan1ce Member Posts: 14
    edited 30. Nov -1, 00:00
    having had so many scans in the past few years my one piece of advice is close your eyes keep them closed while you are inside the scanner listen to music it drowns out the knocking sounds and I've even thought of my christmas list one time .....what I'm saying is go by your gut instinct your inner feelings and if in doubt check it out again and again until you feel happy about it , I "just knew" I wanted my cervix removed no idea no explanation thank God I did :shock:

    Hi lavenderlady! Thanks for this. Is an MRI inevitable? And are there open ones here? I know in Canada you could get them if you were willing to travel and pay. THank you for your reminder to trust my instincts. I'm sorry you have had to go through all this stuff too. It's just not fair, is it?
  • jan1ce
    jan1ce Member Posts: 14
    edited 30. Nov -1, 00:00
    dorcas wrote:
    It is alarming at first when you get a diagnoses but your doctor will explain treatments and whether physio or hydrotherapy are options for you in addition to pain meds.
    I'm sorry you've already had a scare with cancer and it's understandable that it's not far from your thoughts..... so it's doubly important to talk this over with your doc so that you can be reassured. :wink:
    ask as many questions as you like. :wink: there's always someone around to chat to.
    Iris xx

    Thanks, Iris. Alarming indeed. I think I could bear to hear I had some arthritis in my shoulder or my knees or whatever. But I didn't expect that I would have pain in so many places and more each day. This is the part I don't understand. Why is it spreading and so rapidly and is it really all over or is it just referring from a few spots? I've also got to get back to some exercise and need some advice on that. I was doing WIi Fit and enjoying the jogging the most - now I think that's out. I have continued to walk - and suffered the consequences to be honest. I'm used to long walks and I suppose I overdid it. Quite scared this will spread to my hands since I make my living at the keyboard.

    Well, now it is evening and here comes the pain. It can be good all day with just a few twinges and then evening comes and it starts in my back and then starts to radiate down and sets in. I'm using an ice pack as I sit here and then switch to a hot water bottle when I go to bed. It's comforting once I am lying down. Last night I put a pillow between my knees and just like during pregnancy it did ease the tension. Another thing is I get to a point where I can't keep my clothes on because they hurt my body so I switch to a loose dress. What a crazy crazy thing to have. I can't wait until this isn't consuming my every thought. I can be very obsessive! Could you tell?
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Jan1ce.... you are not 'obsessive' just worried. :roll:

    please write down all your symptoms and any pattern you've noticed with regard to the pain, morning/ evening stiffness, any swelling and sleep disturbance.
    all of these symptoms mean something in diagnostic terms and it does help the docs to see how arther is affecting you. :wink:

    the radiating pain is hard to cope with and if on top of that you are not sleeping then it would be wise to ask your doc about meds that can help. Many of us on the forum have to have night meds or we would be up all night with the pain and discomfort. I take Amatriptyline which helps me but your doc knows you best and will know what could be prescribed that will be effective.

    I also use a pillow under my knees... it's amazing how some simple things can help a lot!

    gentle (((hugs)))

    Iris x
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hello, Welcome to the forum. I am sorry to hear of your health problems and can understand some of them as I've had quite a history of problems and also phobia's and depression.

    I have OA and over the last 3 years or so, it has gone to quite a few of my joints. Mine started in my spine, which can cause referred pain in other places. It may be that you have some referred pain causing your problems, but I'm no expert. MRI is only used when the docs need to see a bit more of what is going on, and is not something everyone has by a long way.

    I had an MRI scan, believe it or not, this morning :wink: Sunday!!!
    If you do need one, then the experience is not terrible. I have had 2 and the second one, today, they gave me a choice of music, a buzzer to press if you panic or have a problem and the girl who did it told me what they where doing when they moved me. The machine was light, with air blowing across my face, and I could see the end of the tunnel. Mostly, I kept my eyes shut, as this was reccommeded as relaxing. The noise the machine made was not that loud and I could still here Radio 2, which is what I had chosen as I'd been listening to it in the car.

    Its not comfomfortable on the back, but they made my head and neck, comfortable with pillows, but you are lying on a metel surface which is covered to stop it feeling cold and horrible, but it is still hard!!!

    Discuss all your fears with your GP and I'm sure they will be able to help put your mind at rest. It may well be that you won't need an MRI, they will diagnos you by x-ray and examination along with your symptoms. As an MRI is an expensive and often something that is used by lots of the departments in a big hospital, as well as lots of people having the same fears as yours, it will only be suggested if really needed, but you can still refuse, no-one can make you have one! Its just in your interest to get the best treatment available.

    I hope you get some reassurance from your GP. If you need someone to talk to, ring the Helpline at the top of the screen, they are very good, they've helped me. :wink:
    Good luck, Sue
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Janice,

    I am sorry things are so up in their air for you just now and hope the gp will be bale to hep with your questions. Its sometimes cus your out of line via a joint that hurts that makes so much pain everywhere.

    I think its totally understandable that your worried and really hope your gp will be able to help you to feel less worried. Sometimes it helps to jot down your questions so you remember to ask them, I always forget and do a list which I then forget to take with me.

    Really hope your gp will be helpful and you can get the questions answered. I wish I could help but leaving you a ((( ))) and nice to meet you. Cris x
  • lululu
    lululu Member Posts: 486
    edited 30. Nov -1, 00:00
    Hi Janice welcome to the forum I am sorry I can ot give any useful advice my personal experience is limited but can say you have come to a good place. There will always be someone here who can advise.

    lulu
  • frogmorton
    frogmorton Member Posts: 29,884
    edited 30. Nov -1, 00:00
    HI Janice

    Very scary isn't it?

    You dont know what is happening (you hope its not rue - yes you fear orther things too), you dont know what WILL happen and how quickly.

    Best thing is to seak inforn=mation from reputable sources like this site A/C have laeflets on OA you can download and us lot will help if we can.

    Once you have your meds sorted and are doing what you can to help (as you say weight loss - maybe swimming?) life feels WAY more under control and ok.

    I promise.

    and us lot will help you and support you while you go down that road.

    Love and hugs

    Toni xx
  • jan1ce
    jan1ce Member Posts: 14
    edited 30. Nov -1, 00:00
    ugh. tired (and scared) of all the suggestions people are making to me.

    am i describing FMS? or is it DVT? or is it a blocked artery? now i'm starting to scare myself even more with ovarian cancer, kidney cancer....all those things that make your legs hurt.

    stop me!
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Jan1ce and welcome,

    I know it is easy to say, but please take deep breathes and try not to panic. Stress and panic makes our tolerance to pain less ie we feel it more. I also know myself that when I'm panicking/stressed my muscles are tense and that adds to my problems.

    I had OA starting in my hips ... meds, physio, hydro, heat pads all helped and eventually I got new hips. I have earlier stage OA in my knees. At the moment the knees are behaving .... However when each hip got really bad it made my knee, lower back, lower leg and even my shoulder and neck hurt as my whole body was having to compensate and work differently.

    STOP researching until you have a diagnosis! Record your symptoms and write down questions that you want to ask at your appointments instead.

    You sound a tough lady to me, you will handle this.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • angie1973
    angie1973 Member Posts: 248
    edited 30. Nov -1, 00:00
    STOP!!!

    Is that better? :D

    I know how scary it suddenly is to have found out you have OA, and having all these extra tests will help confirm this and make sure there is nothing else to worry about.

    What I would say apart from the already wonderful advice from this lovely lot on here, is not to worry about something that isn't true. At the moment, there is a good chance you have OA, and I know it's naff having it as I do too, and some days you just want to crawl into a dark cave and stop existing, but other days you want to kick it and enjoy your day, but once you know for sure what you are dealing with, you then have to power to have some control over it.

    It's really hard to not worry about the what if's, and I can imagine the C word is there in your thoughts. Only natural since you've fought the beast off before. But try not to stress and worry, and come here if you feel anxious, there's nothing to be ashamed of being upset or worried, but we can do our best to gee you up and give you a boost!

    My OA is in my neck, hands, knees and lower spine, questionable of my hips since they give me grief, but I often wonder if I get this because I've walked with a limp that day and knocked my centre of balance off etc.

    I have FMS too, and it is very different pain although similar in it's location.

    I hope the MRI goes well for you, and if you need a giggle or a virtual hug, you just yell!

    Ange..xx
    _______________________

    Only 99.9% possessed by the giggle monster.........the other 0.01 % just eats chocolate..
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You must be a dreadful patient. :D A little knowledge of many things (all of which you apparently have). You have faced far worse: arthritis is not the end of the world (no matter what type it is). It will alter your world, change your perception of yourself, but you will learn to cope, you will learn to manage it, you will learn what you can and cannot do. Unfortunately, unlike cancer, it can't be cured. That's the b***er about it. Diagnosis is complicated sometimes, and doesn't happen overnight (mine took 9 years). Starting a diary of symptoms is not an excuse for extreme hypochondria - it's meant to help you give as full a picture of you as you can, and how you are being affected by these problems. That will help the docs. Good luck on Tuesday - let us know how you get on and what your GP has to say. Thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi Jan1ce

    please Don't Panic by deciding what the symptoms might be before you've even been seen by your doc. :roll: you're using up vital energy needed to fight arther.!

    One day at a time , and one worry at a time too. You know you have OA and the pain that goes with it.....that in itself is enough to concentrate on. :wink:

    You're seeing your doc tomorrow... so start writing up your list of symptoms and questions you might want to ask. If you have someone who can go with you.. so much the better as s/he can help you stay calm while you wait.

    I know you are worried, understandably but try to do something today that might distract you but be pleasant too! out for lunch, a little shopping if you like that, a trip to the park or cinema.... something to take your mind off your worry and stop the whizzing chaotic thoughts in your brain.

    deep breath...

    calming (((hugs)))
    Iris xx
  • jan1ce
    jan1ce Member Posts: 14
    edited 30. Nov -1, 00:00
    LOL dreamdaisy and others. yes, I am a terrible patient perhaps. I actually work in the women's health field so know far too much. However, in these days of Health Social Media, doctors actually encourage (or at least need to encourage) us to be partners in our own healthcare and that means understanding it and asking the right questions.

    I went to the doctor this morning and she was pretty good. She wants some blood tests to see what might be going on as far as inflammation goes and then will see me again. She assured me that an X-ray would show any cancer and she wanted me to put that word out of my mind and let things take their course - i.e. fibromyalgia? that's a word for down the road as we explore what's going on. She didn't, and darn it I forgot to, mention anything about a rheumatologist but she is approachable and should I get edgy I think I could contact her to start that process. I have a friend who wants to give me a recommendation so I'l lhold tight for that. I've actually had a couple of 'good' (i.e.manageable) days. I think this has a lot to do with my feeling a bit more confident and uplifted - by positive thinking and with the support of all of you.

    So thank you very much and I will definitely be adding to this forum as I can.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I'm glad that today went OK and that you seem to have an understanding and sympathetic doctor. Please keep in touch and let us know how things progress - you don't sound as tho you are based in the UK - am I right? I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • jan1ce
    jan1ce Member Posts: 14
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    I'm glad that today went OK and that you seem to have an understanding and sympathetic doctor. Please keep in touch and let us know how things progress - you don't sound as tho you are based in the UK - am I right? I wish you well. DD

    yes, i am in the uk altho i spend a lot of time in canada (toronto) and have had a lot of medical treatment there. will keep in touch.
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Janice,

    Wow Canada! Nice place, Kath goes there sometimes (if you see this Hi Kath and a ((( )))! ) and it sounds lovely!

    Please do keep i touch..... we worry about people and its always nice to know how you are. Cris x
  • mjking
    mjking Member Posts: 145
    edited 30. Nov -1, 00:00
    Hi Janice

    Not sure if my experiences will help 'cause we don't quite know what you have (!)

    I had about 12 - 18 mths of steadily worsening pain in both my legs, making it very hard tro bend over. Eventually my wife gave up waitring for me to do something & booked an appointment with our GP.

    Within minutes he'd diagnosed me with severe OA in both hips. He recommended ibuprofen for pain relief and sent me for blood tests at my local hospital. They also X rayed my hips and my spine.

    When I saw the consultant - about 3 weeks later - he confirmed the OA in both hips but no where else.

    He recommended resurfacing rather than total hip replacement (THR) due to my young age (50 at the time!) and general good health.

    I won't bore you with any more but do let me know if you do end up having something done on your hips! I may be able to help!

    Good luck with everything!

    Mike :)
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, I'm glad you had a good visit to your GP. She's told you everything, really. Before anything else its the bloods that might give the first clues along with the x-rays. Try and stop panicing and relax now. I know I'm not a good one to talk about relaxing and not worrying, but I do try and keep some control!!! :roll: :wink:
    Luckily I'm married to a scientist so he knows when to stop me! :shock:
  • happyhopper
    happyhopper Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi
    I've got hip OA, but about a month ago I got a rash (doctor called it purpuric rash) which started whilst on holiday in Hungary and then about 10 days later my knee started to be painful. I iced and bandaged the knee and the rash seemed to disappear at night. It has now virtually gone, so I hope yours does. I''m seeing consultant Fri so I ill ask about the rash and let you know if I get any info.
    Happyhopper