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update with fellow sufferers.

Posted , 10 users are following.

chickabee
chickabee

Hi all,

It's been a while...now ready to face a bit of reality.  Last post was seeing the GP for referal to Reumatology.  This didn't happen...'you are a work in progress' says doc.  Next stage before being referred is more blood tests and Xray, and a low dose of Prednisolone ( which made me feel ill and more symptoms than I already have, so stopped them)  Results...moderate OA of hips, and bloods 'normal.  Doc still thinking it is more likely to be PolyMyalgiaRheumatica...so this time he gave me a mega 20mg dose of soluble Pred.once daily.  One dose was enough to prove I absolutely cannot take these steroids.  Symptoms went into overdrive with extra heart pain/headach/nausia/ insomnia (was up the entire night in a state if anxiety and mild hallucination), plus the usual, swollen lega, breathlessness and no relief from muscle pain at all.  Am not sure whether depression was from the drug, or because it is all getting me down...especially after attending Epsom hospital orthopaedic clinic, where I stood for a couple of hours in a hot portacabin (OPD).  Had to go home without being seen as I couldn't physically stand any longer and there were no seats available.  What a waste of time and misery making!

Sorry to rant on, but am now of the opinion that I'd be better of easing myself along with the dis-ease than making things worse.taking the pill route.  To be totally honest, I stopped reading posts on this site because it made me feel bad hearing how you are all suffering without much hope or help, but have to admit it is a relief to vent with fellow sufferers...so hope this is not making you feel bad as well???

Am praying for you all for better days ahead.

Shalom

Chickabee

 

0 likes, 43 replies

43 Replies

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  • TeresaJS
    TeresaJS chickabee

    Posted

    Chick-a-Bee. who says ther's no hope? You've not been reading the posts, aye, aye, .. People that try new things come here and share and we exchange ideas to help each other.  

    There is hope! 

    Sleep well. wink 

  • deirdre._03652
    deirdre._03652 chickabee

    Posted

    HI...try to not lose hope please...there are new drugs ALWAYS coming on the market.....I am sorry that you have had to go through so much, you have been very, very UNLUCKY, especially drug trade wise.....I truly hope that it gets better and you find a treatment that helps....good luck, and take care ....HUGS to you....DEIRDRE xxx
    • chickabee
      chickabee deirdre._03652

      Posted

      Thank you Deirdre...will soldier on, what else is there to do!  Will try and muster HOPE, because that is what we thrive on eh.

      Blessings

      Chickabee

  • christine26761
    christine26761 chickabee

    Posted

    Chickabee, sooo sorry to hear if your ordeal,please don't think there's no hope..we all live on hooe....there is light at the end of the tunnel..I'm witness to that....you really do need to see a Rhumatologist and get some sort of diagnoses, at least then you can start seeing some light..you can't even start to deal with your issues if they are not acknowledged-diagnosed...I ampraying  for you chickadee...really hope things improve for you..it took 10 years of differing Symtoms being treated..grrr..before my diagnoses as it did with many of us on here...if I had only know then, what I know now...I would have insisted on a Rhumo referral..and not painfully wasted soo much time..have a lovely day....be blessed..:-) shalom to you too..:-) cxx
    • chickabee
      chickabee christine26761

      Posted

      OOps...wrote a bit, then my PC went into chaotic mode...a bit like me!  Thank you Christine, I will try and push the doc for a referral tomorrow when I see him.  I do totally rely on hope, it was the depression (new to me) that makes me rather negative.  Fleeting though...hopefully.  Am taking on board all that you say...reaffirming what I already know to be true..  Updates to follow.  Have yourself a good day.

      Blessings

      Chickabee

  • Bee70
    Bee70 chickabee

    Posted

    Hi Chickabee

    It's a slow process and we all have good and bad days but we do not give up and the help on this forum is a godsend to many of us.

    Once acceptance has been taken, then treat one day at a time.

    We are all here for each other, so please do share your experiences with us all.

    Gentle hugs and stay positive. wink x

  • kaz_40
    kaz_40 chickabee

    Posted

    morning chickabee dont give up hope, we have all had to endure countless tests blood tests galore tets coming back negative been made to feel like its all in your head, 1 specialist making me out to be a liar I gave him what for? my gp sent me to see a rheumatologist who then diagnosed fibro after having even more damn tests its a rocky road we have to travel to get a diagnoses. your gp needs to send you to see a rheumatologist i would battle all the way to get seen by 1. its great once youve got a diagnoses but more battles lay a head dealing with fibro, but you have us on here for support dont loose heart I know its not easy weve all been their and are wearing the t shirt. chin up keep fighting gentle hugs take care xx
  • loxie
    loxie chickabee

    Posted

    oh chickabee, i so sympathise.  I too cannot take prednisolone; my doctor was to be honest somewhat disgusted at me for refusing to take any more - a resigned shrug of the shoulders and slight shake of the head and the attitude that if i didnt want to be helped, she wasnt going to offer anything else.  I have OA in ankle and thumbs and attending the clinic for the ankle was similar to you, total misery.  An average of four hours waiting to see someone for a scant five minute appointment only to be told 'we have to fuse the joint' (with resulting permanent disabilty) - how many times do I have to say NO to an inexperienced junior doctor with poor English?! A gazillion blood tests later and my GP group practice still haven't diagnosed fibro - just more referrals - next one is a neurologist.  To be honest I don't believe I'll get any better treatment/results if fibro IS formally diagnosed - I'll only get offered more of the same pharmaceuticals that either don't work or make me ill (steroids, opiates, etc).  I guess a diagnosis may bring with it some actual belief and sympathy but I don't really care about tea and sympathy and believing me is only any good if it results in effective treatment, of which there appears to be none, or at least the jury is out regarding 'proper' treatment, here in the UK anyhow.  I hear you about feeling even more down when reading of the agonies fellow sufferers contend with, some with no light at the end of the tunnel.   The one big benefit I get from these forums is there's always someone willing to do more research, find out new routes and come up with new ideas - everything is worth a try! The other is that these people understand - they understand I'm not malingering, they understand my pain, they understand my heartache and frustration.  That really helps me through each rotten painful day.  I now know more about the condition, I have great relief at knowing now that it's not instantly life threatening, that it's not going to kill me tomorrow and more than anything else, that it's finally being acknowledged as real and more research is being done continuously to find a) the actual cause and b) ways to treat it.  I can go armed with better information when I see useless doctors, I can use terminology I hadn't a clue about before and try to make them listen rather than just sitting there distressed and confused.  Lastly, I am totally inspired by the true grit and determination of my friends on here - they give me hope.  xxxxxx
    • kaz_40
      kaz_40 loxie

      Posted

      smile well done , well put We are all here for each other and battle on we must, their are people that are far more worse off than we are, battling cancer both adults children, theirs alot of sufferring in this world Im not belittling what we have as its hell on earth but when you see what other people are going through it does make you stop think. well on a good day at least. our battle cry is onwards upwards 1 day hopefully a cure will be find. take good care of yourselves every one and gentle hugs xxxsmile
    • kaz_40
      kaz_40 loxie

      Posted

      Morning loxie how are you today hope your not in too much pain hope you have alovely day take good care of your self gentle hugs xxsmile
    • loxie
      loxie kaz_40

      Posted

      Hiya Kaz.  How are you hon?  Hope you're a little better today.  I'm achey today but not in total agony at least.  Had a bad night's sleep for some reason, just couldnt settle and kept waking.  Fed up hearing myself groaning and moaning every time i turn over cheesygrin My upper arms are aching - like I've bruised them, but not actually acute pain.  My arthritic thumb joints are giving me gip today for some reason, probably the damp weather - at least I know that an anti inflamm will help the OA, trying to leave it til lunch time to take one as they upset my stomach unless I take them after food.  My discomfort seems to centre round my neck, shoulders and upper arms presently, all rather stiff and crampy.  Luckily the pain in my thigh and leg seems to have forgotten me for the moment, biggrin shhhh here's hoping it doesnt hear me lol.  
    • kaz_40
      kaz_40 loxie

      Posted

      Hiya loxie you me both no sleep then hun I was up all night with my dog hes not good at all, My back, legs were very painful last night didnt know what to do with myself last night with the pain.Im arthritic in my right thumb I wear a hand support with thumb support it doesnt help pain wise but it keeps my thumb straight, as it keeps bending over and locking into place, trying to do anything using my hands at thesmile min is anightmare.yesterday all i could hear was cracking in my neck and back?we are doing well between us arnt we, hope your thigh and leg pain leave you alone todaylol you take care gentle hugs 
    • loxie
      loxie kaz_40

      Posted

      oh kaz, sorry to hear about the dog.  How worrying for you.  I thought he was doing better now he's on meds.  Please do keep me updated about him.  I hate it when pets are sick - they cant tell us what's wrong or how they are and I feel so helpless for them.  My cat Alfie is getting on a bit now and I get so worried when he's off colour, thinking the worst.  He's been with me for so long he's my soulmate.  I'll keep everything crossed for you that he starts to really improve soon. xxxx
    • kaz_40
      kaz_40 loxie

      Posted

      Hi loxie he seemed to pick up,but hes gone down again he seems to be in some sort of pain, I feel so useless as i cant help him, Hes not seeing the vet till sat, I just hope prey theirs nothing more serious going on I will keep you posted hun take care rest plenty gentle hugs xxx
    • loxie
      loxie kaz_40

      Posted

      how stressful.  How horrible when you know they're in pain and can't help and they cant tell you what's going on.  I'll keep him in my thoughts and hope that either he starts to improve or the vet on saturday will be able to help. xxxx
    • PiliPalaB4ch
      PiliPalaB4ch loxie

      Posted

      Loxie my thumb and wrists are giving me gip too, however, I have started wearing pure (99.9per cent) copper bangles and it does help. It doesn't get rid of the pain altogether, but it does dull it! I wear splints and wrist bands when I go out and use my sticks! 
    • loxie
      loxie PiliPalaB4ch

      Posted

      Hi pili.  glad to hear theyre helping you.  I tried them for some time but didnt get any benefits unfortunately.  Also tried wearing a bracelet with magnets in, that didnt help either.  I have a splint for my right hand but it's so restricting that it's off more than on, so I dont bother anymore.  At present I still have normal movement just horrendous pain at times.  I try not to do any movement that aggravates them but I can see the base joint on my right thumb is becoming swollen and mishapen so I'm guessing at some point in the near future I may have to rethink everything.  I have real issues with balance because of the damage to my right ankle and would benefit greatly from using a walking stick but holding it in my right hand is impossible and even the ones designed for difficulties with grip still give a problem just because of having to put weight on that hand.  Luckily it's easy to hire a foldable wheelchair for holidays and trips etc., bit miffed I can no longer wheel myself in one anymore because my grip isn't good enough - saving up for a sooper dooper charged mobility scooter - Hells Grannies lol.
    • PiliPalaB4ch
      PiliPalaB4ch loxie

      Posted

      hi Loxie

      my husband has been given a wheelchair from the physio department, and we bought a second hand scooter for him last year. He has rheumatoid arthritis and OA  and OP - he takes so many steroids he has now developed cataract in his eyes so doesn't see too well, so the scooter can be a problem! Anyway what I wanted to say was if you are in touch with the physio dept, they may be able to help with getting your own wheelchair. We look hysterical when we are out, him in his chair and me with my Nordic walking poles!! Still we do go out now and again! 

    • loxie
      loxie PiliPalaB4ch

      Posted

      Hi Pili glad to hear you still manage to get out and about at least sometimes.  It's important for us all not to give in and become housebound, which hastens the progress of any illness or condition.  I did speak to the OT and PT depts about a wheelchair but I'm not immobile enough to qualify and to be honest, the chairs on offer were antiquated and cumbersome, I need a lightweight folding one so my partner can put it in the car.  They did offer me a new type of crutches which fold up and sit under the forearm but even with them, they require grip and weight bearing on the hand/wrist which is far too painful and not practicable.  Just a bit of a bummer that its right hand and right leg that are most affected, would be easier if they were on alternate sides.  Never mind, I'll keep shuffling smile
    • loxie
      loxie

      Posted

      Whilst I'm writing - has anyone tried hypnosis for pain relief?  I'd like to explore it but there would appear to be a whole range of different techniques and approaches and when I paid for hypnosis sessions some time ago for quitting smoking, it cost a fortune and all the hypnotherapist did was ask me to visualise things, not something I'm very good at at the best of times and it had nil benefit at all.  I was hoping that hypnosis meant that I would be put into some kind of trance like state and wake up unaware of what had occurred but with different thought patterns, instead I just sat there getting grumpy with her and when I left, I lit up a cigarette to feel better lol. 
    • kaz_40
      kaz_40 loxie

      Posted

      morning Loxie I brought my own wheelchair from ableworld in the sale its lightweight easy to get in and out of the car. its ablessing to have as I can no longer walk around anywhere I have to be pushed. Argos sell wheelchairs also look on gum tree and recycle. I know the british royal legion rent them out but I think they were £15 or 16 pound I cant remeber how long that was to hire it for.I didnt try to get one through my nhs as its such apain what you have to go through to get one.If your able to I would buy your own. some websites prices start from £70 Hope you have alovely weekend loxie and not too much pain take care gentle hugssmile 
    • kaz_40
      kaz_40 loxie

      Posted

      Hi Loxie I went to a hypnotist a few years back, the one I saw was really he good. He did put me under into a trance but I was fully a ware of what was going on around me.I had 4 sessions costing £35 it solved the problem I had so for me it worked and money well spent. It had crossed my mind to be honest with you about giving it a go with the fibro take care gentle hugssmile
    • loxie
      loxie kaz_40

      Posted

      Thanks Kaz, that's really interesting.  That type of session would be what I was looking for.  I'll have a look on one of the professional body websites to see if I can find a local qualified and registered hypnotherapist.  Is there any facility to get referred from the GP to keep the cost down do you know?
    • loxie
      loxie kaz_40

      Posted

      The one I saw charged £100 for one session (at least a decade ago) what a waste of money that was.
    • kaz_40
      kaz_40 loxie

      Posted

      blimey thats alot I had my session in 2003   you dont mind paying out if it works but to get no benefit. 
    • kaz_40
      kaz_40 loxie

      Posted

      Hi Loxie I havnt come a a cross that where gps can refer you. I think it has to be private funded by ourselves. Id do some ringing round and check on peoples prices as they can vary. take care gentle hugssmile
    • loxie
      loxie kaz_40

      Posted

      hiya kaz, yeh i'll do that.  We have an Old Town nearby where there are several courtyard style commercial premises which house various practices like osteopath, sports masseur, physio, hypnotherapy and the like, there's bound to be one there that's a registered practice.
    • kaz_40
      kaz_40 loxie

      Posted

      Hope you find some one hun and their reasonably priced, couldnt get over the £100 one good job I was sitting down at the time when i read thatlolyou take care have agood weekend x
    • Bee70
      Bee70 loxie

      Posted

      You don't mind paying for any treatment to help with pains, as long as you benefit from it. One can pay so much and NOT get any relief.rolleyes x
    • Bee70
      Bee70 kaz_40

      Posted

      Hi Kaz

      I have considered as well as mentioned to by many friends to try hynotherapy, but just feel a bit sceptical about it.  Also finding one that is not going to rip you off either is difficult to.  Who can you trust these days? Some are genuine and some just to take your money. rolleyes x

    • kaz_40
      kaz_40 Bee70

      Posted

      Thats the problem Bee its knowing who you can trust and who wount rip you off. I saw hypnotist in 2003 I had a few sessions with him he charged me £35 for an hour. he was good and genuine it certainly helped me with the problem I had at the time. so it was money well spent. The problem I had as never come back. smile I was lucky with the person I saw but their not all like him unfortunatly gentle hugs take care xx
    • kaz_40
      kaz_40 Bee70

      Posted

      You dont mind paying so long as your going to benefit from it, its when you pay out for something it doesnt work but unless you do try stuff you never know if it will work or not.its a catch 22 its always worth asking friends work collegues if they have been to a hypnotherapist and if so what they thought to it and if it had benefited them. I cant complain about the one I saw he was brill and didnt rip me off.smile 
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