Recently Diagnosed

rugbygirl
rugbygirl Member Posts: 691
edited 1. Mar 2011, 09:55 in Living with Arthritis archive
Hi, My name is Jaki and I have recently found out that I have Degenerative Arthritis of the Spine.

The thing is that I haven't had this diagnosed by the Orthopaedic specialist but the pain specialist I went to see. I am not due to see the Orthopaedic Specialist until 15th March and I am worrying myself silly about what is actually wrong with me. I would really appreciate some help with this. I have spent most of the week crying because I don't fully understand what is wrong. I have tried to look on the internet to find out information but as I dont really know what I am looking at I seem to be making myself worse. I have also seen that the majority of people who have this are normally in their 60's (according to the things i have read on the internet) and I am not yet 40. I have been suffering with back pain since July of last year and nothing is helping with the pain. Because of this I am short tempered as well as very emotional.

I cant really talk to anyone as I dont know where to turn and I feel as if I am a burden to those around me. I have had to give up work because I was only on a temporary contract at the time the pain began and then I couldnt get another job because no one would employ me because of the pain. Now I am not sure what I can do or if I can do anything. It just leaves me in a turmoil.

Does anyone else suffer with this or have any suggestions to help me cope?

I would really appreciate any help at all.

Thanks

Jaki

Comments

  • Poppyg1rl
    Poppyg1rl Member Posts: 1,245
    edited 30. Nov -1, 00:00
    Hi Jaki,
    First of all welcome to the forum, sad that you had to join us in our Arthritis battle, but the support on this forum is amazing.
    I would recommend that you give the helplines a call tomorrow, their number is at the top of the page, we've all called them at one time or another and they are wonderful. I'm sure they'll be able to give you some advice on what you can do next. You need to get your pain sorted out too, you can't think properly or function in chronic constant pain I know, so see if your GP can help or refer you to a pain clinic. I'm 39 and been suffering from PA for a year and it's tremendously scary and overwhelming at first - you are not alone.
    You can PM me anytime if you want a chat
    Thinking of you Poppy X
  • rugbygirl
    rugbygirl Member Posts: 691
    edited 30. Nov -1, 00:00
    Hi Poppy,

    Thanks for that. I will definitely give them a call tomorrow. I have got medication and I have already seen the pain clinic but because of an allergy to morphine the only thing that the pain clinic can do is to inject my spine. Apparently I have to wait till April for that.

    Jaki
  • caterina57
    caterina57 Member Posts: 1,424
    edited 30. Nov -1, 00:00
    Hi Jaki
    Welcome to the forum - you will find lots of support here, I know I have.
    Unfortunately I too suffer with degenerative osteo arhritis - spondylosis of Lower back and Neck (Lumbar and cervical). I also have OA in wrists and thumbs - possibly fingers and seems like its coming on in hip and knee too.

    I am now 54 but I started with mine 20 years ago - so its not just older people that get it. I have recently had a very bad flare - 10 weeks off work and am just starting to phase back - 4 hrs a day but even that is hard. I get very tired quickly, and some days have real difficulty in walking. I am at my worst when I suffer very painful spasms.

    I have recently had a physio assessment they say they cant help I have to "self manage" but I am starting hydrotherapy tomorrow!
    What meds are you taking to help with the pain?

    If you want to chat anytime you can PM me - the people on here are really helpful and supportive - you are not alone.
    Cath
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 28. Feb 2011, 03:47
    Hello, rugbygirl, I don't have what you have but I can empathise with your distress. Firstly, don't look things up on the internet, there is far too much inaccurate info on there and you will just frighten yourself silly, which is pointless and a waste of valuable energy. Secondly, tell us how you are feeling as we have all been there at one time or another and can support you in a way that 'healthy' people cannot. There is no doubt that you are facing a period of great unceratinty and that your life is changing, but as to how much is yet to be determined.

    Arthritis can strike anyone at any age - I think our youngest affected person is four. Staggering, yes? Everyone associates this pestilence with the older members of society and that is because not many people are that well informed about it - and why should they be? No-one really knows about an illness until they (or someone they love) is affected by something.

    I am not going to say 'don't worry' or 'don't fret'. What stupid words they would be because of course this is a time of huge tension for you. The pain clinic people may well be on the right track but they are not the ones to diagnose - I am sure they thought an explanation would help but sometimes it doesn't. Let us know how you get on on 15 March, and please talk to us before then - we will do our best to encourage. The support I have received on here has been astonishing - I cannot believe I struggled for so long, on my own, thinking I was the only one. (Amongst my 'real' friends I am but with my 'virtual' friends I am not. It really helps to know that.) I wish you well. DD
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Jaki

    Isn't Degenerative Arthritis of the Spine the same as Osteo Arthritis of the spine? There are quite a few members on here with OA of the spine, all of varying ages.

    I am sorry that you have been diagnosed with this and it is best to wait until you see the ortho consultant but the pain clinic are extremely knowledeable. Have you had an MRI for this to have been found out? The injections can be very helpful. It is such a shame you have to wait until April. I had injections by xray direction for sciatica and have been sciatica free for well over a year now (touch wood). Could you try to get an earlier appointment with the ortho by phoning his secretary and seeing if there are any cancellations? Has physio been mentioned to you as a way of helping the pain in your back? My daughter has started attending Back Classes, twice a week for an hour for six weeks and she hopes this will help with her back problems. This is at a London Hospital. She swims regularly which she says helps her, especially mentally as she loves it so much.

    Phoning the helpline is a good idea, as already been suggested.

    I do hope that you get some help very soon, you most certainly need it.

    Look after yourself,
    Elna x
  • speedalong
    speedalong Member Posts: 3,272
    edited 30. Nov -1, 00:00
    Hi Jaki and welcome,

    As well as giving you a diagnosis(!) did the pain specialist also give you some pain managing strategies/therapies/meds?

    The ortho will be the one to give you the actual diagnosis, he should order x rays. Most people associate arthritis with the the elderly, but a quick trawl through the forum will make you realise that you are not alone and unfortunately it affects those of all ages.

    The worry and anxiety that you are currently experiencing will make you less tolerant of and more suspectible to the pain. I echo what others say, ringing the helpline is a really good idea. The info on this website too is good, but don't bamboozle yourself.

    Try and rest as much as you can, try warm baths, hot wheatie bags and keep moving regularly. Don't bottle it up - share with us out here in cyber space - that is what we do - we seek support and reassurance when we need and offer the same to each other.

    Keep posting,

    Speedy

    (I have osteoarthritis of the hips and knees - had it since mid 20's and I'm now 44.)
  • rugbygirl
    rugbygirl Member Posts: 691
    edited 30. Nov -1, 00:00
    Thank you all for your words of support. At the moment I am very emotional. I cry at the simplest of things - people being nice to me or something sad in the news.

    I am taking so many tablets at the moment -
    co-codomal 30/500
    gabapenthin 300
    diclofenac 50
    opremazol
    as well as an anti-depressant and tablets for an under-active thyroid.

    The pain clinic have said that they might introduce some additional tablets to my list or increase doses but I have to wait for my doctor to be advised. It wouldnt be so bad but the doctors is about 100 yards maximum and because it has to be posted(?!) I have to wait 3 weeks for the letter to get there!!! I'd be better off if I was seeing a doctor at the opposite end of the country.

    I have had problems with walking and moving in general and I seem to be losing sensation in my right hand and leg. Trying to undo jars and bottles are becoming awkward and I get frustrated and angry with myself for not being able to do things that I used to be able to to. I have started getting angry with others as well and its not fair on them.

    I just want to be able to cope and not feel like I cant do anything. I know I can do more than I think sometimes, but then I think I can do more than I can actually do on other days. This will result in me pushing myself too far and ending up hurting more than I was already. I think that makes sense :???: :lol:

    I have tried to contact the ortho consult to change the appointment but there is nothing available to make my appointment earlier but there is nothing. I have been referred to the physio but again I have got to wait for the appointment, I have tried to chase up but that is a no go at the moment.

    Elna - as far as I know it is the same but I am only going with what I have been told by the pain specialist who was looking at my MRI results. I am hoping that things will sort themselves out a bit when I have the injection.

    Speedy - the pain specialist is working out the pain strategies etc but it is taking time to sort them out. There is only one specialist for pain and one nurse to help and he has to cover a large population.

    I am glad that I found this site and more importantly the forum

    Thanks everyone

    Jaki
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Jaki

    "I have had problems with walking and moving in general and I seem to be losing sensation in my right hand and leg."

    That does not sound too good, does the pain clinic, gp or someone in the medical world know this? If things get worse, have you thought about going to A&E? All your appointments do seem rather far apart from each other.

    Life can be so difficult and upsetting at times, can't it?

    Luv
    Elna x
  • caterina57
    caterina57 Member Posts: 1,424
    edited 30. Nov -1, 00:00
    Hi Jaki
    If you are loosing sensation it could be that a nerve is trapped or pinched you need to speak to your GP - have you ever had sciatica before?
    Cath
  • rugbygirl
    rugbygirl Member Posts: 691
    edited 30. Nov -1, 00:00
    Hello again

    I had a road accident when I was 15 and I suffered with sciatica from then on. It got worse when I had my second child but I didnt really think much of it as I took pain killers.

    I have told them all what is happening but they dont seem to be too worried. There has been a suggestion that I may have carpal tunnel in my right wrist but I am not sure on that one at the moment. I have got to see my GP this week so I will mention it to him.

    I am glad that I have actually got appointments as they were requested initially in August and I finally saw the ortho consultant on 13 Jan. I had my MRI scan on 2nd Feb but I wont get the official results until 15th March - the earliest appointment I could get in January.

    I havent actually got any appointments confirmed for anything, just in limbo at the moment. I think when I get into the system properly things will be better but its taking time which is frustrating!
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Morning Jaki
    How are you feeling today? not too bad I hope.
    Oh and welcome to the forum.
    There isn't much I can add to the information you have been given by the lovely people on here.
    I have RA so not the same problems as yourself, but I can understand your anxiety, waitingg for results.
    I am also not going to tell you not to worry cause I am a big worrier too.
    So I will just send a hug((((((((((()))))))) and say try to keep thinking positive. As for having difficulty doing daily things...eg.opening jars there are gadgets to help. Also there is a thread at the top of page of hints and tips which everyone has put together, I hope it gives you some ideas.
    Take care
    Juliepf x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Morning rugbygirl, I hope you are feeling as OK as you can be this gloomy morning (gloomy weather-wise, I mean!) These things do take time but now you are in the system it should all flow fairly smoothly. If not, don't sit back and wait for appointments etc, be prepared to chivvy and harry. You need answers and they need to provide them: let's hope it all gets sorted and soon. DD
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
    Hi Jaki,
    I hope today is going ok for you, i wanted to say hi as your story seemed so familiar.
    I have had a bad back since my first child was born 13 years ago. It got worse when i had my 2nd 12 years ago and has been up and down alot since then. I had an operation 3 years ago as i had a trapped nerve going down my right leg. It started off numb but then the pain kicked in. You should go see your doc and say again about your legs. My legs do feel numb and almost not part of me at times. In july i fell over and since then my back and legs have been really bad. Im on alot of pain killers and ive had to give up 2 of my jobs, my 3rd is for only 3 hrs a day and i also feel in limbo. I cant get comfy at night and wake endless amounts, my partner has to help me turn over as i get still and too sore. I joined the forum a few weeks ago, feeling much the same as you, i had no one to talk to who understood the pain and feelings i was having, the forum has been a great place, post when ever you want or need to. Others here are absolutely great and do such a good job of perking me up when i need it.
    You are more than welcome to PM me any time, I am 32 and and understand alot of what you are going through,
    All the best Seamonkey
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hello, Nice to 'meet' someone new, but not nice for you having to put up with arthritis. I'm no medic but, I know from experience that the trapped nerves and nerve problems do cause tingling and numbness for various sorts. We have so many in our body and also the pain/tingling, or whatever isn't always where the nerve is damaged, but pain relieved.

    It may be an idea to go along to your GP and ask about the numbness and any other problems you have. Then you may be able to relax a bit. I have Carpel tunnel and ulner nerve problems, which start up pain in strange places!!! Love Sue
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Jaki,

    I am sorry you have had the diagnosis but glad you found the forum though.

    I got extensive arthritis in my back and neck and well its hard at times but have found a way round most of it to some degree cus that's what we kinda do i guess.

    I agree the ortho opinion is something you need but the pain clinic consultants are very good and able to diagnose as well. They use the words wear and tear, early onset, or early degeneration in the early stages of oa for some reason. After that they grade it into stages it goes through. Its a hell of a shock and i remember thinking what it would do to me when they first told me I had it in my spine.

    I also know after all the years i have had it its never been as bad as i feared it would be... doesn't mean it hasn't been bad but its not as bad yet as I feared it would be. I was lucky though and had major surgery to it in my 20's so maybe the ortho's will be able to help you when they get to see you?

    Tis hard to have to wait but it will all come together and for you to know exactly what is going on in there for you. In the mean time if you go back to the pain clinic don't be afraid to ask they questions as they understand what pain is and how it works and if your really lucky they are also very good at helping to slow it down or stop hurting to some degree.

    Fingers crossed you don't have to wait too long to be seen by an ortho and i promise you it does get easier as you get to know its limitations and what it is more. nice to meet you. Cris x
  • Compositor
    Compositor Member Posts: 122
    edited 30. Nov -1, 00:00
    Hi Jaki

    I'm John, welcome to forum, like yourself I'm relatively new to the forum, but, the people/members on here are really welcoming/friendly/helpful. I know exactly where you are coming from as do many others, it isn't easy, medication can be a minefield for some and ok for others. Good luck and keep in touch. John
  • rugbygirl
    rugbygirl Member Posts: 691
    edited 30. Nov -1, 00:00
    Hello to everyone

    I want to thank you all for giving me something positive to focus on and more importantly the support.

    I finally feel like someone understands me and that I am not 'making up' any of the symptoms. It's not as bad as it seems to be and I think that with the support of everyone here I have finally realised that its not going to stop me doing anything. If anything I will still do things just a bit slower than before.

    I am feeling a lot more upbeat today and now that I have people who understand how this feels it is helping a lot more than I expected.

    Thank you for all the suggestions on where to find things on here as well. I appreciate all the help.
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Jaki :smile:

    So relieved that you are feeling better in yourself today, a new start to the week and a new start for you. :smile: You have found us lot and we are here to support and help each other as much as we can. You are most definitely not making up any of your symptoms and please do not let anyone tell you so and definitely not the medical profession. :roll: I was shocked to hear on this forum, that some people are told that it is all in their head when discussing their symptoms and pain.

    Chin up,

    Luv
    Elna x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I think our ability to cope with whatever version of this pestilence ails us does vary, and for a number of reasons. Things that help include having fun, a sunny day, buying a little treat, laughing, etc etc etc and things that don't include dull weather, tiredness, fretting, pain and the realisation that your life has changed/is changing and not necessarily for the better. We all get down from time to time and the fact that others may be worse off is of little relevance: you feel how you feel and the best thing about this forum is the fact that you can come and vent and tell us all about it, knowing that we will understand. I hope you have continued in this morning's more positive vein - if not, it doesn't matter, that positivity will return at some point - well, I find that it usually does! I wish you well. DD
  • rugbygirl
    rugbygirl Member Posts: 691
    edited 30. Nov -1, 00:00
    I was shocked when I went to my doctor back in August of last year when I started suffering I went to my GP and explained that I had pain in my back, tingling in my right leg and numbness in my right hand.

    The response I got was that it was impossible for me to have those symptoms. I was that furious that I changed my doctor surgery (I had moved anyway and I was meant to change). The first time I saw my new doctor and explained everything he referred me to the specialist and started giving me painkillers that actually helped.

    DD - I have spent most of the afternoon asleep and have not long woken up so in some respects I am still very positive thanks.
  • constable
    constable Member Posts: 2,115
    edited 30. Nov -1, 00:00
    Hi Jaki, I am fairly new myself. I was diagnosed with severe arthritis in my left hip and arthritis in back the later part of last year, and have been told I need to have a hip replacement . Just waiting to hear when that should be.

    I have two girls and I am 51, youngest girl being 13. I know how you feel being very frightened and that you are to young, I thought that but you can be of any age.

    I am still learning myself to do a little then have a rest and do a little more. And finally, as my husband would say, I have started to use a stick, that took some doing, but it does help.

    Keep in touch

    karen xx
  • rugbygirl
    rugbygirl Member Posts: 691
    edited 30. Nov -1, 00:00
    I have been using a stick for sometime just to try and take the pressure off a bit but also to tell others that I am not as stable or quick on my feet as they are. I didnt want to be reliant on one but at the moment that is the only way I can get about.

    My friend suggested a fold up one that you can put in your bag and use when you really need to which I am considering once I have got my treatment sorted.

    Hope things improve for you soon

    Take care
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Took me a long time to give into the fact that I should use a stick, not all the time but certainly when things are bad... It is a sad state of affairs when I get funny looks as I park in disabled bays, but the difference in the looks when I use my stick and when I don't is ridiculous..

    I may yet have to give in to using two sticks as now both my knees are competing against each other in a game of 'lets see who can cause the most pain' :roll:

    Best wishes
    :grin:
  • barbara12
    barbara12 Member Posts: 21,258
    edited 30. Nov -1, 00:00
    Hi Jaki
    And a very warm welcome to the forum, like you I have OA of the back, I am 60 now, but the pain goes back around 10 yrs, but I had mild probs since I had an accident on a fairground when I was 10.
    The back is so complex, I get pain for a couple of weeks and then it can just disappear
    The one thing I havnt had yet is a scan, I am just hoping they will do one soon.
    I am on the same meds has you, but I also take amitryptaline at night, sorry I am not giving you many answers, but you have made a positive step talking to us lot.
    I do wish you well, and you know wre we are when you want to talk or have a rant.
    Love
    Barbara x
  • frogmorton
    frogmorton Member Posts: 27,485
    edited 30. Nov -1, 00:00
    Hi Jaki

    I had back issues as achild even but officially from when I was 23.

    Eventually I had back surgery at the ripe old age of 39!!! I WAS the youngest there and the biggest baby too!!! (needle phobe!)

    I spent knocking on 20 years being fobbed off and just want to reassure you that you are now on the right path to getting some proper help.

    Well done for being persistent and do keep us in the loop with your progress

    Love

    Toni xx

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