Any one else with arthritis in back and scoliosis?

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seamonkey
seamonkey Member Posts: 323
edited 19. Jan 2011, 09:57 in Living with Arthritis archive
Hi to you all. Im new to all this forum stuff but it does look good.
I have had painfull back and legs etc for about 11 years. I was always dismissed by docs untill 3 yrs ago when a doc actually took me serious. She sent me for physio which made things worse and my back totally went. I had sciatica and the pain was emense. It took 4 months but i had a discectomy and thought that would be an end to it. I fell over in the summer this year and went docs after 3months of having asore back again. She sent me for xray and gave me meds. Meds have helped only a bit and i am quite imobile at times. Xray showed up boney nodes on spine which she says is arthritis. I saw a consultant 2 weeks ago who examined me and didnt give me any king of diagnosis. Didnt even mention arthritis. Hes sending me for another MRI and then seeing me again on 7th feb. Thats my story scaled down somewhat! :!: Is there any one who has had the same thing and how are you managing etc? My doc says I should quit work to prevent any extra damage. What do others think? I have 4 kids and my income means alot as my partner on a very low wage. :idea:
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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello seamonkey, it is an interesting place here, the stuff I have learned! You sound as tho you are having a rough time with it all and getting a diagnosis can be time-consuming. What sort of a consultant did you see - was it a rheumatologist? There are many forms of arthritis and sometimes it can be hard to spot which one is going on. Another MRI could be a good thing, then you see him again in just under four weeks, so that isn't too long to wait. I hope he has some answers for you then. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
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    Hi Seamonkey, sorry to hear you're having such a rough time. I too have nodules on my spine on the thoracic level and cervical level, this has been diagnosed as Osteoarthritis. I also have Psoriatic Arthritis. I hope it's a Rheumatologist you've been referred to and if not perhaps you could ask your GP to do so. It does help to get a diagnosis.
    With regards to your working, certainly you should take advice from your Dr. but I think actually giving up work as opposed to coming out of work on sick leave, seems a bit premature when you don't yet know the full story. At least if you come out on the sick leave you will still have your job and at least be paid some sick leave money.
    I do hope some of the other much more informative folks on the board will see your thread and post. This board is a wealth of information.
    rita.
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
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    Hi Seamonkey,
    I can relate to you somewhat. I am currently undergoing tests myself for a diagnosis and am also off sick from work..
    I think it is definately too hasty to be thinking of giving up work..
    If you have been off work for a while you are prob on the longterm sickness plan...
    My advice would be to work closely with your doc, they are the ones along with yourself who know if your fit or not for work.
    I know you can feel under pressue about returning to work and the feeling of getting back to normality is immense(am feeling that myself) but i know myself that if i went back to work today cause i felt ok, i would prob be off again tom.. meaning i would then be off on short term sickness again an be in more trouble.. so complicated..
    I am going to go with the flow, my doc doesn't want me to return to work till i have a diagnosis and till i have things under control as such and at the moment i'm not in that position..
    I have another 5 months of half pay.. at the end of that if i have not returned to work then thay shall prob discuss my future at work..
    If they do decide to get rid of me due to ill health, i will prob be in a better situation than if i decided to leave on my own accord..
    Your doc is being too hasty.. you are a long way off at the moment..
    Are you in touch with occy health or union??

    Take care
    Feel free to ask me anything anytime...

    We are all here to try and support one another

    love
    Tracy
    xxxxxx
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    Thanks to you all for taking time to reply. As im self employed i dont get paid any sick leave if I have to take time off. After a really hard day today I think in going to have to take some time off though. As im a childminder I really need to be thinking about a different aproach to work. I have tried a few part time posts but found after just a short while I was exhausted and couldnt carry on. Docs havent said what type of arthritis it is just that she was suprised how quick its progressed. Its not a rhumatologist im seeing think its a orthopedic specialist. I will ask to see a rhumatologist when am next at docs. It is great to have a site like this with all the help and know how of others.
    seamonkey
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
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    I see what you mean now sea monkey in regards to money and that..
    I've been looking at ways that i can earn money at home.. it's a long process of trying to find legit companies.. will let you know if i stumble across any..
    keep us posted on how you are getting on..

    Take care

    Tracy..xx
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Seamonkey,

    Belated welcome fro me as well.

    I got oa and pa in my spine and neck..... then some of it they call spondylosis and spondylitis.... kinda gets confusing about there :wink:

    Been growing extra bones, fins and lips they call them and the lumber down is quietly fusing its self up with the extra growth. Be honest that has made it easier and luckily its kinda fusing up relatively straight.

    I think you could do with a bit better pain control and the ortho should b able to say hat kind f arthritis you have but the extra bone growth would sort of indicate oa I think?

    I was lucky and had a full decompression 25 or there abouts years ago and that still hold..... though surrounded by the extra bone growth the cord isn't compromised.

    I do still work but am also self employed cus be honest I wouldn't stand a chance in a 'real' job. I am too slow and too much plod but I do tend to get the jobs done to enough degree.... I do look at it all and think hell I wish I was able to do...or could do it quicker but there is hope you will find a way round t all flower.

    It does get easier as you get use to it and find a way around it o hang in there and with luck and a bit of better pain and anti-inflammatories you will be able to return to work.... Oh and I agree with Rita, its probably too early to stop work. Wait and see what its all up to but for now its a good idea to take a bit of time out. Nice to meet you Cris x
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
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    Hi Seamonkey

    I have slight scoliosis of the spine since being a teenager and nothing was ever done about it. I had a bout of sciatica when pregnant and again over a year ago for about one year. A surgeon said he could do a small op but I wanted that as a very last resort so he referred me to the pain clinic and I had injections inbetween L4 and L5 where my problem lay (surgeon requested an MRI to check this) and I had injections by exray direction. So far (touch wood) a year has passed by and I have no sciatica pain. I have read that if you have scoliosis it is considered to be advisable to see a surgeon who specialises in this field. I am a member of the scoliosis society and have learned a few things from the magazine they send out about 3 times a year. To date I have had no operation on my back.

    I do hope you can get sorted out soon. Could you perhaps work part time or lessen your work load a little? Childminding is very tiring work especially if you are lifting children etc. I look after my grandchild only about 1 day a week whom I love to bits but it can be hard work physically!

    The consultant you saw has requested that you have an MRI - this will probably enable him to find out more before giving his diagnosis. He may well have his own thoughts about it, but decided to keep stum until he sees your MRI scan.

    Did you ask him at the appointment what he thought was going on with your back?

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    Hello all,
    Having a bit of a better day today. Didnt sleep a wink and after my son had managed to drag me out of bed ive limbered up enough to get some house work done. Ots have been and left numerous things which is great as stuff they left last week was a god send. They are also going to fit something to bed that will get me into a sitting position with out having to shout some one to help! i have spoken to parents of children I mind and we have come up with a solution to lessen work load just now. Am just glad that they are keen the children still remain with me. Ots have also suggested applying for a blue badge and something called DLA. Ill see how all that goes but im managing to :grin: today! Hope your all having as good a day as you can. This really is a brilliant way of interacting with others. I seem to be getting more and more isolated. Friends that used to come by with thier children each week seem to have stopped coming. My partner has been trying really hard and i need to show my appreciation more. How did your partners take to diagnosis and physical help you need?
    All the best ,
    seamonkey.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Mine has been nothing but supportive and doesn't have to do that much to help because a) I am used to this now and can forge on thro the pain barrier and b) he is out of the house for at least 12 hours a day, usually 14, sometimes 18! I got the kit I needed early on, as I realised that things were not going to get better or go away (I don't have much, better banisters and a raised toilet frame) and I supply my own crutches. The next bit of kit I need is a bungalow, but he will have to provide that. There is no point talking to him about it as he is the perfect example of an ostrich. He, like my mum, still believes that things will ease over time. Strewth. What a pair of twerps. I am glad to hear that you are feeling brighter within yourself, seamonkey. It is more than half the battle, believe me. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
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    Hi seamonkey...

    Glad your having a better day.. i've had a gd few days .. gd job really as i've had no choice to go out the house for various appointments.. am reckoning me being so active will have it's wicked way with me over the next few days and i shal soon be eating my own words lol.. i sure we all know this feeling :???:

    I must admit my partner has been great.. he does all the cooking and i do things like the washing of clothes and we share the workload.. he can tell when i having a bad day and will tell me to chill lol.. i don't let him do everything.. i have to keep active and i don't like the idea of totally being reliant on him(that my pride lol)
    i sometimes feel guilty, but then i know he loves me and he wouldn't do it if he didn't want too..
    Some days i can't hardly move and i do rely on him, but not once does he moan.. we have a joke about it.. won't say it on here as i may offend ppl.. but no he is great and i couldn't ask for any better..
    I'm one of the fortunate ones who is not on my own and my kids are a great help too.. for that i am extremly grateful and appreciate everything..
    I do have them days when i think why me and i hate whats going on... but then i look around me and i become real thank ful....
    sorry i'm droaning on lol... you asking that question just made me realise how lucky i am ... :grin:

    Right i'm gonna shut up lol..

    Take care..

    speak soon..xxxx
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • frogmorton
    frogmorton Member Posts: 29,491
    edited 30. Nov -1, 00:00
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    Hi Seamonkey

    If you get working families tax credit you keep it even if you are off sick so long as you are not sacked. If that's any help/

    Money is a huge worry when you have kids and are poorly as well as the practical side.

    I think I messged you on the helpline was it? I had back surgery about 7 or eight years ago so there IS hope once they have got to the bottom of it.

    Anything I can help with feel free to ask

    Love

    toni xx
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi Seamonkey
    Sorry I'm late replying but havent been on line for a couple of days. Used to be a childminder so i know how heavy it is...I had a sore back at the time but nothing like now and I looked after different children partime and it worked OK
    I was diagnosed with OA in my hips and lower spine......eventually whe sopn I got my GP to believe there was something wrong {couple of years} and he sent me to a rheumy. Back to the GP and then I was on paracetamol for a long time....once again I went and talked to the GP and he referred me to an Ortho who did an X Ray and said "you need 2 new hips" what a jump from paracetamol to that. Had 1 THR last Feb and the other one was due to be done Oct but he decided it might be referred pain from my back, so referral to a back specialist....kypho scoliosis...he referred me to a physio....who saw me 3 times and then referred me for acupuncture.....Had the first one today so we'll see if that works. The MRI you're going for should tell the docs a lot more and hopefully you'll get a diagnosis and better pain relief. Love Hileena
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    Hi and a good morning to you,
    I ve not yet seen a rhumatologist may be thats what they will suggest next. I dont hold out much hope on the MRI front as have had 2 before. Although it would be good if an op would ease things for a time. Unfortunately with the wage I get and my partners were just above the threshold for working tax credit. We could manage but we struggled before i started working and the thought of doing that again is horrible.
    The ots were great yesterday, I ahave raised toilet seats, shower rails a perching stool, next time they come they are giving me a step for shower and a rail on out side, new banister for stairs and the best bit, something i can blow up to get me into a sitting position. That will be good.
    things have eased slightly so im hoping it lasts for a while. although when it gets tough again it always knocks me back again. Me and partner have come up with a plan so he knows when i could do with extra help etc with kids and house. Code words!! Very dramatic but I cant quite get myself to ask for help yet.
    It must be very tough for him hes gone from having to do nothing in house and only watching kids on a friday night while I work to this. Im glad hes moved back with us as I really needed his support.
    Best wishes to you all and thanks again
    seamonkey.
  • frogmorton
    frogmorton Member Posts: 29,491
    edited 30. Nov -1, 00:00
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    Hi Seamonkey

    Oh thank gooness for the OTs she has made so much difference to how you feel I can tell. Wonderful that they are giving you so much help and i know it will change things for the better for you.

    Shame about the wf tax :sad: Never mind - at least if you can't go back you know it's there - so many don't even know about it do they?

    The code word is a good idea - it is so hard to 'let go' when you have been used to be able to do everything and of course you would do it differently too.

    Take care won't you

    Love

    Toni xx
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi Seamonkey
    It makes all the difference having a good OT doesnt it.....I have one that is determined I will have things LOL whether i want them or not. The last was a bath lift.....which I didnt really need.....find it a bit hard to get out but can do it.......but it came Her idea was that I could get in and out anytiume i wanted to whether oT was there or not so that I could soak and ease the pain but this thing was bright blue and so big it took up half the bath so no way could I soak....there was no room. I have a grab bar {just a cheapie......a sucker one} she say try that and if it works she'll get a permanent one put in. Shes also doing a course this month some time that she wants me to come on "How to use your muscles" or something like that......looking after your back and how to do things without straining.
    Yopu sound so much brighter today
    Love
    Hileena
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    Hi Hileena,
    It was a bit like you. She came in and breezed about house and said this is what your haveing. which is just what i needed as knowing me i wouldnt have asked for a thing.
    I was going to have a bath lift too but when she came wed she said i was walking too painfully and not having any turning in back so she didint want me using it at mo. I do like a soak when im bad i can lay there for an hour and half just topping up with hot water. Bliss! ends when i get pulled out by my partner though! hehe.
    Im much better mentally which is great.
    Hope your well,
    seamonkey.
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    Hi toni,
    Code word going well! Im getting more support which is good he has offered to come with me to next ortho appointment which i accepted. Ive given notice to childminded families and am on sick from sunday job. Taking time to see how I go still do a friday night caring though, couldnt bring myself to give that up.
    Hope your well,
    Seamonkey
  • frogmorton
    frogmorton Member Posts: 29,491
    edited 30. Nov -1, 00:00
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    Hi seamonkey

    I am doing ok today - ahve even been for a swim :shock:

    Friend has visited and am now resting a bit :smile:

    I am glad the 'word' is helpinga nd also that OH is coming with you for your next appt. That will help OH undertsand what is happening and give you support too. I never go without mine unless I HAVE to.

    Hope your day is good and you cope with the job today.

    LOve

    Toni xx
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    Day off today thanks toni, untill i go to evening job anyway! Ah swimming I used to take kids at least once a week but now the thought of being colder and taking so long to undress and dress and getting into pool means they go with OH instead. :sad: orthopaedic asked what i wanted, I said to be able to do things with kids when they wanted, work full time and to be in less pain! Never got an answer though. Infact come to thinkof it he didnt say anything at all! Thats why OH coming although i did warn him to be polite!
    Rest well glad youve had a friend by,
    Seamonkey
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi Seamonkey
    Glad you are feeling much better......I do not like a shower...when I had my hip operation i wasnt allowed in the bath for 6 weeks.....I suffered LOL I bet you look like a prune after you have one of your long soaks :lol::lol::lol:
    I'm sore but trying to find out what is causing it....is it the first acupuncture on Wed or more exercise than n ormal or housework??? I must get myself moved I'm going out tonight.(44 mile return drive) and I feel shattered so must get wakened up
    Take care
    Love
    Hileena
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    hi Hileena,
    How on earth do you summon the energy to go out? By 9 when kids in bed im crawling up the stairs behind them. Good for you though for having a social life! hehe.
    My appearance never great any way so partner wouldnt notice if i was a bit pruney :lol:
    I had a really bad night at work as soon as i walked in someone said "are you putting this on?" I was so cross granted it was first time i had taken stick to work.
    When i got home i just cried and cried. Im sick of struggling on and so am finally going to take docs advice and go on some sick leave. Not what i wanted but body says i need it.
    Hope you had a great night out and are not suffering too much for it today.
    seamonkey
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi
    Sorry I am late answering your post, I OA of the spine and hips, like you I was told I have bony growths on the spine.
    Like you say the information we get on the NHS is sometimes not very good.
    I have been seen by the pain clinic, which did help with the meds, I had injections in my spine under xray but sadly these didnt work for me, but everyone is different
    I do hope you can get the help you need very soon, it must be so hard when you are working.
    I do wish you well
    Love
    Barbara x.
    Love
    Barbara
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi Seamonkey,
    I go out because I find if I stay in {which would be a lot easier} I feel much more tired and almost falling asleep.
    You have children.....I have 2 but one is 31 and the other is 30...next Friday. They're still my kids but neither of them are at home ...plus the fact I'm an Independent Avon Sales Leader so I can work that to suit myself....If i dont work I dont get paid but i do have the choice. I'm glad you are having some sick leave....thats sensible.......I am on team at church...it can be hosting or making coffee etc but the lad who is in charge of the teams has had 2 knee replacements so understands and keeps an eye on me. So the 44 mile trip was a team meeting at church....one every 2 months for that......It was great....nothing serious about it at all...we had coffee and cake {which I shouldnt have had LOL} and chatted for ages and in between times.
    I go to church on Sun Morn and Wed night is one of our groups...sometimes we are in starbucks other times its a teaching video or something like that....My avon now is down to friends....I cant walk up and down streets and drives now.....so I have about 25 customers dotted all over the place...I drive to them and usually go in and have coffee. One of my customers is from our local Arthritis Care group and we meet once a month at the meeting and then usually once more b efore the next one. so when she orders or needs a book we meet in Starbucks....spend about 2 hours nattering and then she gets the book and takes it home, if she wants an order she e.mails it to me, then when it arrives we meet in starbucks again for me to deliver it.... LOL what an excuse LOL
    Take care
    Love
    Hileena
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    Hi hileena
    Unfortunately up here in orkney we dont have starbucks. but if we did id find any excuse to go!
    Ive been helping out with a birthday party today. I did craft activities for those that didnt want to join in games etc. 22 5-6 year olds so it was great fun. My kids are 5, 10, 11 and 13. Theyre great and i would never wish to be without them. Theyve been very tired tonight as they got to stay up later than usual last night due to the fact that i was feeling ok. Oh how ive paid for that today.
    Ive eaten far too much birthday cake when i should be cutting back.
    Another weekend done but looking forward to next one.
    You seem to have your work life balance well in tune. Hopefully ill get there too.
    Seamonkey
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    Hi barbara,
    Thanks for posting to me. The doc has mentioned a pain clinic to me too. Im thinking of trying something other that tramadol as they seem to be giving me bad side effects. Im on slow release ones at mo and thought if i just took when i really had too might get less side effects. Something to ask doc about.
    It would be nice to get a written diagnosis from someone. And mayb a care plan worked out. Along the lines of pain relief and any suggested treatments etc.
    Its a shame the injections didnt work for you but i do hope you have something that helps you.
    All the best
    seamonkey