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It has been 4 years...

BehBeh Posts: 4
edited 6. Sep 2012, 14:10 in Say Hello Archive
Hello everyone. Im not too sure if I am on the right place to begin my post so if anyone can let me know where it is more appropriate, please don't hesitate to let me know. Firstly, i thank you for taking time to read my novel, I do apologize for the length of my message. Thank you very much in advance for any inputs you could give. It is much appreciated.

I first experience a pain on my left ring finger around september 2008. It eventually spread to almost my entire body until I was almost bed-bound. I was first being seen by my GP who continuosly prescribed me with different kinds of painkillers that didn't helped at all. We tried to persuade my GP to refer me to a specialist but he insisted that It isn't something that he cant handle himself, that I should continue to take my tablets, change my diet and lifestyle. 3 months have gone by, I was a constant guest at A&E, until such a time that my husband needed to roll me on the bed just to change my clothes, help me get up and do basic necessities such as having my bath and nature calls. At 32, I was devastated. It is then that he insisted that I should be seen immediately. 

Alas, I was referred to a Rheumatologist. After several blood tests, The consultant told me I have Reactive Arthritis. I was on prednisolone 5mg fo a year and I must admit, It did helped me get back on my feet. During that year, I also had steroid injections on both of my jaws, physiotherapists appointments and numerous painkillers. A year of steroids and I was finally tapered of. January 2010, I was totally off steroids. While being tapered off, I noticed Bald spots on my head. Ignored the first small one until such time I've got several bald spots the size of a 2pound coin. Informed my doctor, but dismissed the fact that it is due to being taken off steroids. It was this year that I was also pregnant with my 2nd child,gave birth on April 2010, my hair had grown back and I went back to work on February 2011. I occasionally get the minor aches and pains but this time it was more tolerable. I guess with what I have gone through, my pain threshold is absolutely high. 
May 2011, when it all began...again. As days, weeks, months gone by, it became worser and worser. I'm back at the rheuma office by July. My original consultant is now gone from my hospital. In July-Nov 2011, I may have seen 3 differrent rheumatologists which gave me either a steroid shot, painkillers and kind advice. The last I saw said he wasn't convinced by the way I was diagnosed and told me I have to be re-diagnosed. i have been offsick from work (I work in microbiology by the way) for quite a few times in between July 2011 and March 2012. I can tolerate alot of pain, but I guess I also got my limits. The pain robbed me off my sleep, my time with my kids and my joy with my job. On February 2012, I was supposed to be started with Sulphasalazine, which didn't pushed through because the nurse wasn't happy this time with my liver enzymes levels. I had to have another set of blood tests, on March, which needed to be repeated on April because apparently, some of the tests requested were missing or not done. I had liver scan which turned out normal, my enzymes are still higher than normal, my EBV ab was positive but still, no definite diagnosis. 

Since April I was off from work because there isn't a day that passed that I am not in pain or swollen. I am currently on 150mg diclofenac sodium but I still got fingers that looks like sausages now, my wrists are now straight because of the swelling, my shoulders, knees and feet are also not spared, I've got a sorethroat-like pain that feels like I have a lump on my throat and painful/difficult to swallow, and pleurisy-like pain on my right torso. My thumb and big toes on my feet is now deformed because of a painful growth/bump that have been there since february. I had an xray of my feet and hands  about a month ago and I am now awaiting my next appointment next week. The last thing that stuck on my mind since my last visit ( with a new rheumatologists ), was, she too is unsure of what my condition was. All my blood results since 2008 were not that significant. It is either borderline or slightly elevated. My BUN's apparently are normal so there is no way that I can have gout. I also asked the possibility that I may have lupus, but she returned the question to me and asked me what makes me think of that. On which she eventually dismissed the fact and told me not to think of it. 

Please, please, help me. I am lost and I've got the feeling that the situation is starting to get over my emotions. I can't be depressed, i dont want to, I've got kids, my youngest just turned two and I cant carry her anymore. I pray to God that there is one soul out there that can give light to what's going on. What is wrong with me? I have tried turmeric, honey, apple cider and was also thinking of having accupuncture.

Thank you everyone for your time and God bless everyone. 

Comments

  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    Hello Beh and welcome to the forum. Yes, you are in exactly the right place as this is where most people introduce themselves.

    I’m sorry you seem to have had a very tough four years. Uncertainty is very hard to deal with, especially when one is trying to hold down a job and raise a family at the same time. It is an unfortunate fact of arthritis that, in its auto-immune forms particularly, it can be very hard to diagnose and it’s a common story on here. Yours was originally diagnosed as Reactive Arthritis but now they think it might be a different form. The good news is that, on the whole, treatments are pretty similar. However, the sooner you can get on some meds which will actually deal with the disease rather than the symptoms, the better that will be for you.

    They were doing the right thing by holding off on the sulph while your liver enzyme levels were being checked out. If you go onto one of the Disease Modifying meds you will be regularly checked for that and other stuff. However, you don’t say when your next rheumatology appointment is. I presume you have one?

    Just for the record, I can’t personally relate your ‘lump-in-the-throat’ feeling to arthritis. Maybe you should see your GP about that.

    It would hardly be surprising if you were depressed and you would certainly not be the first person to find a short course of anti-depressants might help. However, I’m sure a proper diagnosis and treatment would help more. As for the apple cider, honey etc – well, I tried all that stuff myself years ago. Nowadays I stick with the meds.

    Have you thought of having a word with our Helplines, Beh? They are very understanding and might well be able to offer some advice. However, if you feel you’d like to, I’d suggest you do it today as they probably won’t be around much from tomorrow until after the Bank Holiday. I do hope things improve for you soon.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh dear, you poor girl, you have been through the mill haven't you? You put a great deal of detail in your post (too much for me to remember I'm afraid :oops: ) but you seemed to do well when taking that small dose of daily steroids, to me that indicates that you have some form of inflammatory arthritis. There are many forms of it and it can be very hard to diagnose. Believe me you are not alone in struggling with not knowing what is going on with you, there have been others in a very similar situation, one or two have travelled the country trying to get answers. I have to go now, I have stuff to do, but I will give your situation some thought and come back later. Take care, I am glad you have found the forum and I hope we can help. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • fowls48fowls48 Posts: 1,357
    edited 30. Nov -1, 00:00
    Hi Beh


    You poor love , i cannot help you much , but the bald spots sound too me like allapetia for give spelling , caused by stress , my mother had this years ago and was given medication so go back to doctors .You have had very good advice from the forum so far .Sorry i cannot help you anymore .But good luck too you and keep coming back here as everyone is very helpful and friendly .


    karen xx
  • frogmortonfrogmorton Posts: 25,132 ✭✭
    edited 30. Nov -1, 00:00
    Gosh beh

    you poor poor thing!!

    I am horrified that you have been treated so badly :( Am I right that you are not in the UK?? I only question this as we don't have 'shots' here. Might be just different terminology - hope I haven't upset you.

    I have negative or insignificant bloods too, but l was put on disease modifying anti rheumatic drugs straight away! I cannot imagine what you ahve been through and how badly you have suffered.

    Please do stay on here and keep talking to you - we at least understand your very real pain. Most of us will also understand your distress about the impact your pain has on your children.

    We may not know what exactly is wrong, but the treatments for most inflammatory arthritises are the same/similar so can help with info on what we take. We can also share any tips we have practically and with kids.

    I hope that those Xrays you have had will help the diagnosis beh :(

    HUGE HUGE HUGS to you

    Love

    Toni xxx
    Love

    Toni xxx
  • BehBeh Posts: 4
    edited 30. Nov -1, 00:00
    Words cannot express how grateful I am for all of your messages. Thank you all so very much. I wasn't able to reply straightaway coz I have been very unwell lately, to the extent that I cannot open my own bottled water. :cry: To give everyone an update, My Xrays and ultrasound has come back, sadly, it didn't gave much help with the diagnosis, inflammation was there but there was no signs of synovitis. Not that I have hoped that It would actually show something abnormal, perhaps I was just hoping that it have all the answers to what was going on. I am being urgently referred to a gastro because of my abnormal Liver enzymes which hinders the doctors from starting me with sulphasalazine. I have had repeat blood tests and even repeat lupus screen. These were almost two weeks ago, I am still waiting for my Gastro appointment and my next rheumatologist appointment. I hope soon will come sooner. Please include me on your prayers. God bless you all.
  • barnesybarnesy Posts: 13
    edited 30. Nov -1, 00:00
    Oh Beh, I do feel for you. I had similar problems years ago and my little girl was suffering because of it also. One of th erhummys i saw told me i couldnt possibly have ra (which had been diagnosed some years before) because i wouldve had more extensive damage to more of my joints than i did he was reallyquite nasty asking if i was disappointed i didnt have ra ! i was just left wondering if it isnt ra then what is wrong with me? i decided to go for a second opinion because i could stand the pain swelling exhaustion emotional turmoil etc no longer. I saw another rhummy who was the complete opposite and understood everything i was going through i was diagnosed not only with ra but pa too ! I was relieved (not at having srthritis ) that i finally knew what was wrong. I do sympathise and hope you get an answer real soon cos the earlier youre started on treatment the better. Best sort liver prob though as a lot of the deugs can have an adverse effect on liver. dont give up on trying to get an answer asap
    love n hugs and good luck x
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    I'm so sorry that things don't seem to have got any better for you, Beh. I quite understand where you're coming from - not exactly wanting to hear bad news but also wanting to be able to start on some treatment which which make life easier for you.

    I do hope they can get your gastro and liver problems sorted quickly so that you can get on some effective meds.

    As for the practical problems - you may find some help on the 'Simple Idea...' thread at the top of the Living With Arthritis forum. I can never open bottle water or juice cartons either and recently a Kind fellow member gave me her spare 'power grip' tool. Now I can open them - usually.

    Please keep in touch, Beh, even if it's only to say how frustrated and/or unhappy you are. We all understand and, if you posted on the Living With Arthritis forum, more people look in there and would see your thread. I do hope things improve for you soon.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Colin1Colin1 Posts: 1,769
    edited 30. Nov -1, 00:00
    Hello Beh welcome to the AC forum and to start this place as good as any but will recommend you post this sort of post on living with arthritis as you will get more feed back for your posts. I read your novel with great interest as it reminded me of myself and the years I spent in such pain waiting for diagnosis.
    You are having such a bad time I wish I had a magic wand or spell for you but in the meantime here is a huge cyber hug for you “there you go is that better” before I say anything else it sounds like you have a really helpful and supportive other half so well done to him to. Although people like us often don’t look ill we feel so bad and hurt so much its hard for other people to understand.
    As for A+E well thats my other home, people who know me claim I have my own room at the local hospital but so much has happened in the past 7 or 8 years. I was also trapped in the bed for a long time and as for GPs if they don’t specialize in something they should pass you on. You also have a right to ask to see someone who specialises. I hate to see people suffer especially those with young families it must make you feel so bad at times.
    I have just spent 48 hours in hospital with liver problems and its not the first time however the count is coming down and its feeling better and the pain is less today. The variation and amount of meds we take is often worse than the illness we have and when you get one med you then need another to counteract the side effects. Prednisolone is quite good as are the steroid injections. Long term use of prednisolone can cause problems but your dose is not very high. The other thing about Pred is it only masks your illness it doesent fix it. But hey when your in pain you will reach for anything.
    You can get a steroid injection when things get really bad its called a DEPOT MEDRONE its a cocktail of steroids you get it in the bum but its great takes a day or two to work but gives you relief from pain for weeks. However don’t know if you can get it if you have a liver problem but its worth asking the Rheumy or Rheumy nurse. It may well give you the relief you need whist waiting for positive diagnosis.
    I understand what you saying about coping with pain I think long term sufferers learn to deal with it although it can still be hard to cope. I don’t want to teach you to suck eggs as they say but you know the mind has a great influence on the body and trying to stay positive is so hard, I used to think if one more person says to me be positive or keep your chin up I would kill them. And there are those that say well theres always someone worse off. NO THERE ISENT not at that moment in time I’m a man ex soldier been through so much but I have sat crying with pain, trying to cope, scared of the future, bills to pay and I cant go to work, so much goes through your mind and that on its own makes you feel ill. I have been in some dark places but hey here I am telling you about it.
    What helped me most was thinking about my daughter and grandkids and having some sort of future with them. The thing is your really stuck until you get a positive diagnosis God it must feel to you like they are really dragging their feet.
    Don’t talk about emotions I’m like a wimp now cant even watch the news don’t know if its the Meds or the disease also had a couple of heart attacks along the way but I am an emotional wreck I must do a post on hear about crying look out for it. Spending quality time with the OH and the kids is so hard and them so young no wonder your emotional. You see the doctor and some see the illness but know one sees the suffering, I used to hurt my own body just laying on the bed. And you cant make people see how ill you feel. Dont know if you have seen this but look up on the internet THE SPOON THEORY the original is from a girl student trying to explain how she gets through a day.
    Normaly when bits of you start getting deformed its RA Rheumatoid arthritis but I don’t know, and swelling is normally inflammation. Those lumps could be noduals again associated with Arthritis I have some on my deformed bits especially my thumb and feet. When I first got sick it was years before I got a diagnosis I was spending more time at A+E until one time I refused to leave thats when they took me serious but it only really came out because I needed an operation otherwise I don’t think I would know now.
    There is light at the end of the tunnel your age is on your side and so many new meds coming out, you are about to get a diagnosis and once you do they will start you on the road to lets not say recovery but I must tell you that some people do go into remission once they get on the right meds. My Daughter suffers with Lupus and it can present some similar things like Arthritis and when you are left for so long its hard not to self diagnose we look every day for that something that will make us better. Changing our way of life, one day its the milk that’s causing it another its flour products, another its something else and on it goes. Been there put the wife through hell god she is so good I don’t know how she put up with me. Just to lighten things up a bit at least your BUNS are normal hey ho

    Depression I know its so difficult to stay focused when you feel so ill and in so much pain and its hard work not letting depression set in but try to find positive things to think about plan the things you will do with the kids when you feel better listen that music you like anything to keep your mind occupied. Now I want to know whats going on as soon as you have seen the consultant so do the others As I said if you post on Living with Arthritis you will get a better response There are some great people on this site and they will support you as long as you need it. All you need to do is post you can normally find people on the site all the time. Dare I say stay positive and keep your chin up things will get better I’m sure and I think you will find lots of people took a long time to get diagnosed. You will get there in the end just keep talking to the people on here when you can. Its what made things better for me.
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • BehBeh Posts: 4
    edited 30. Nov -1, 00:00
    Thank you guys. I was feeling really low today. I was on tears while reading your replies. Im staying positive as much as I can. I must admit Im pretty down today. I have seen the gastro registrar only two weeks ago and he wanted me to undergo liver biopsy within the next 2 months. Which I opted out later because I had second thoughts of the procedure. First of all, It wasn't explained why it was needed, how it would be done and apart from that, my liver ultrasound was normal and I have no abdominal pains whatsoever. I have requested to be seen by a consultant hoping to get imaging of my liver instead. But sadly, my next appointment is not until end of october. :cry: I still haven't heard anything from my rheumy yet since our last appointment which is 3 months ago, left a message today with the rheuma dept to asking for advice. I have by the way started physiotherapy and acupuncture, thanks to my lovely GP who even though couldn't advice me further about my condition, has been very helpful and understanding of what Im going through. Your positive attitudes are really contagious! Im feeling emotionally better while writing this message, Thank you all!!!
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    It's good to hear from you again, Beh, but I'm sorry about the circumstances. It seems you're not much further ahead with treatment. At least you have a good GP, though, which is a big help.

    I would suggest you go back to the GP and ask him for the gastro registrar's report, which he should have by now. That way you should find out why they wanted to do a liver biopsy. I'd guess it's just to rule out any problems before they can start you on a DMARD as these meds can affect the liver but you wouldn't necessarily know anything about it as it doesn't give pain.

    Your GP should also be able to chase up the rheumatologists report from your last visit if he doesn't already have it. He may have had it for ages. Mine never contacts me unless something's amiss.

    Hopefully, with a bit more information, you'll know better where you stand and where to go from here.

    Please keep in touch, Beh.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's nice to hear from you again, it's been a while hasn't it? Please keep in touch more often if you can, Beh, because that way we will get to know you better - and you us. Most of us hang around on the Living with Arthritis board on the forum (LWA) so feel free to jump in with any conversation that's going on, there's also the Chit-chat forum for non-arthritis-related topics. Take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmortonfrogmorton Posts: 25,132 ✭✭
    edited 30. Nov -1, 00:00
    Well HELLO :D

    Lovely to see you posting again - it IS uplifting just to talk to people who understand the pain and frustration you are feeling....

    Sounds like you are doing all you can in terms of chasing your rheumatologist - sadly a lot of us on here do end up chasing them ourselves too - mind you my youngest has epilepsy and i have to chase for her too so i think it's 'normal'

    I am so glad your GP is so lovely! Can I transfer to him too :wink: I Hope the physio is helping and the acupuncture too?

    Take are now and don't disappear again - we can help keep your spirits up a bit if nothing else :D .

    Love

    Toni xxx
    Love

    Toni xxx
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