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Help!!! Getting Nowhere

Posted , 3 users are following.

steff0803
steff0803

Hi

This is very new to me so please bare with me.

I have been having ongoing tests now for 14 months.

Had every stomach test available and all that he shown up is ibs.

Just been to see a rheumatologist and she suspects I could have fibromyalgia as well as ankylosig spondylitis. My bloods have been constantly showing up as having inflammation. As of yet I still have no answers. Becoming depressed is an understatement. Sick and tired of feeling sick and tired. Hell yeah.

Have no b12 either so have to have injections.

Just wondering if anyone else has similar symptoms??

Sick of being in constant pain. 😢

5 likes, 30 replies

30 Replies

  • kirsty08752
    kirsty08752 steff0803

    Posted

    Hi steff I have been sick for over a year now with my stomach was in constant pain all the time an also have recently become depressed an emotional all the time I recently found out I have interstillias cystis syndrome.. Also got fibromyalgia it as took many of tests an scans to get where I am now an so tiring an upsetting I have had doctors tell me many times I am a mystery.. This group is fab for information an ranting they are a lovey bunch I only recently joined an have had loads of information.. Xx
    • steff0803
      steff0803 kirsty08752

      Posted

      Thanks for your reply Kirsty.

      It's just so frustrating. To be honest my doctor isn't very helpful at all and I'm going to be asking to change this week. I've had enough of him looking at me like I'm a compulsive liar every time I go to see him.

      Sorry to rant but I feel like I have hit a brick wall.

      I just want my life back.

      Also is waiting 6 months for a follow up to see a rheumatologist normal?

      Xx

    • kirsty08752
      kirsty08752 steff0803

      Posted

      I totally understand where your coming from steff my doctors are a total waste of space mine won't even give me pain relief. I am sick of the Same look all the time I have been told by my urology nurses to change my gp.. I wish I had my old life back I am 36 an at this present moment I feel about 90 my whole body is aching it's untrue. Don't worry about ranting as we are all going thro the same thing I am happy to find this page as it gives me a lot of support an information what doctors or hospitals don't.. We just have to think positive as stress is are worse nightmare xx
    • steff0803
      steff0803 kirsty08752

      Posted

      Yeah that sounds like me. Lol

      28 but ache and moan more than me 85 year old nan.

      The doctor has just completely treated me like a guinea pig. (His words)

      I'm still none the wiser. I have lost two fantastic jobs and most of my dignity because of it all.

      I don't know anyone else in the same boat and because on the outside I look fine people think I'm a liar. I've been called this on many occasion.

      I stress myself out over it and yeah it does make it a million times worse.

      I've got a very active 9 year old and I feel like I'm ruining her childhood because of it all.

      The doctors don't think about the consequences when they give you appointments for over 6 months. That will take me up to the two year mark.

      I just want to know what's wrong with me so I can hopefully get some sort of life back.

      They keep giving me all different medication and I'm terrified of taking them.

      He's given me amitriptyline now.

      Does this help??

      I'm frightened of the side effects but if they'll help I'm willing to try them.

      Xx

    • kirsty08752
      kirsty08752 steff0803

      Posted

      I can totally relate to you I have a 10 yr old son I have never felt so bad cos I can't do anything with him we use to play football together all the time an all other fun activities an now all he sees his mum crying or sleeping I feel awful.. I find doctors are no help what so ever and have no compassion towards you or your feelings... I am just thankful my husband is so supportive an understanding he is a credit to me I really would be lost without him.. Am not sur about the medication as my doctors will not give me any think apart from co dryad mol which army any use to me as they don't help with the pain at all few ppl have suggested acupuncture to me which I am hoping to try also heat rubs and wheat bags an hot water bottles which I do find works around my shoulder area also my aunty takes
    • kirsty08752
      kirsty08752

      Posted

      Gabapentin which she says is marvellous if u get the right dose but am not sure.. I am the same as u with medication don't like side effects an worry about what they can do. There was a time I wudnt take a paracetamol for headache now I feel like I live on tablets it's so horrible to be like this an depend on medication. An I understand with the job I lost my job due to this as I physically cud the keep up with it xx
    • steff0803
      steff0803 kirsty08752

      Posted

      Yeah I'm the same with the pills. I'm popping them like smarties. If someone shook me I'm sure I would rattle.

      It's such a relief to talk to someone who understands.

      My other half is fantastic but he doesn't get it.

      When I say I'm in agony he's like " but you look fine"

      This is the whole problem. People don't understand something they can't see.

      I think I'm going to ring the hospital again tomorrow also.

      I've had scans/x rays that they sent me for and still don't have a clue what the results were. You would think they would have the decency to keep you updated.

      I'm even contemplating moving to see if the hospitals somewhere else could sort this quicker. Living in London is horrible at the best of times but the hospitals are just over run.

      That's a completely different rant tho. Lol

    • kirsty08752
      kirsty08752 steff0803

      Posted

      I can understand what your saying I have been to 4 differs hospitals in Liverpool an get the same story all the time your gonna be in pain like this for the rest of your life u will have to deal with it !! How the hell can they say that an think that's ok.. My husband is very understanding with it cos he knows am never like this an he reads up on a lot of things which is helpful for him he knows more then me sometimes an he sets my diet out for the week an makes sure am always taking medication. He also comes to hospital app with me now cos I dnt always remember things and always get flustered cos I can never get my point across.. I think you should ring them an totally agree they should have the decency to keep us updated its common courtesy.. Ye I know how you feel when ppl look at you an think sod all wrong with Ye you look fine if only they experienced the pain we go thro.. I have also had a problem with my weight gain I was always 9stone an plummeted to 12 stone nw which isn't helping my self esteem drives me mad all this am so glad to be able to talk about to ppl who understand xx
  • Dotcon
    Dotcon steff0803

    Posted

    Hello Steff&Kirsty. I too am having trouble in getting my doctor to even diagnose Fibro~he suspects it!!! He won't send me to see a rhemotologist and has recommended Tai Chi. I've stopped going to see him,but I am in severe pain. I met a neighbour on Saturday and we had a brief chat when I cqame to walk away I couldn't move because of the pain in back and legs. I had to stand and pretend I was looking at a crack in the pavement~good job I was only a few steps from the house.I had to lie down when I got in. I'm really interested in the experiences of the people on this site and can identify with a lot of them. One thing I have noticed is that some of you seem to be suffering from bladder problems. I have had bladder/kidney problems most of my life. The last time I saw the urologist,he remarked on the way I was standing,sitting and walking. I said I thought it was because I had a kidney infwction,he disagreed and said.....come back and see me in 6 months.That magic interval between appointments. I'm wondering,after reading these posts if kidney and bladder problems are connected to Fibro. It would answer some of my questions. Just a thought. Lets keep on knocing on doors until we are listened to. TTFN Dot 
    • kirsty08752
      kirsty08752 Dotcon

      Posted

      Morning dot I have found over the last year how useless my doctors are. Yes I to suffer with the pains in my legs which is awful. And to your question yes it is connected with bladder problems that was how mine was detected thankfully I have i interstitial cystitis painful bladder syndrome I get weekly injections of hycast to try an ease the pain. I also have reoccurring water infections so am on long term antibiotics for it hugs xx
  • Dotcon
    Dotcon steff0803

    Posted

    Kirsty,Thank you,thank you,thank you. This has been like a lightbulb moment! I have an appt. with Uro in the next few weeks~and when he commented on my posture,last time I wonder why he didn't connect the two conditions. I was taken off long term antibiotics(Trimethroprim) after 5 years by my GP. I hope to go to this appt with many questions~mainly from what I've learned from this site. Uro may even refer me to a rheumatologist and then I could have a definite diagnosis. Kirst,if no one else thanks you to~day,you have my thanks. Sorry Steff I'm replying to Kirsty trough your post!!! Dotx
    • kirsty08752
      kirsty08752 Dotcon

      Posted

      I had many of tests and scans it was only when I had the camera did they detect I had it it was a long and painful year.. It was my uroglist nurse who has helped me the most she as been so helpful it was her who got my rheumatologist app as I see my own doctors are useless.. I am so glad I have helped you I really hope you get some answers when you go xx
    • steff0803
      steff0803 Dotcon

      Posted

      No worries dot.

      This page has already helped me so much. It's so nice to know your not alone ay.

      You brought up about bladder problems?

      Is this common with fibro because a few weeks ago after getting out the swimming pool on holiday I couldn't control my bladder. Didn't even realise it was happening. The horror.

      As I said to Kirsty I have lost most of my dignity already. I dread to think what's going to happen next.

      Should I be mentioning this to my doctor?

      It's so embarrassing

      😓

    • kirsty08752
      kirsty08752 steff0803

      Posted

      I would steff if only as u say for your dignity. I have similar problems with my bladder but mine is sudden erge to go the toilet an needing to rush they have said its common with my prolapse and interstitial cystitis xx
    • steff0803
      steff0803 kirsty08752

      Posted

      It's only ever happened that once but I wouldn't like a repeat performance. Thank god for changing rooms lol

    • steff0803
      steff0803 kirsty08752

      Posted

      If it wasn't for that changing room I think I would have drowned myself in the pool lol
    • steff0803
      steff0803 kirsty08752

      Posted

      I feel like such a moany old cow but the last 3 days have been awful.

      I had a few drinks Friday night and it has wrecked me.

      From head to toe I just ache. Maybe time to stop going out.

      Where does it end tho.

      I'll be a hermit before I know it.

    • kirsty08752
      kirsty08752 steff0803

      Posted

      I am that hermit steff ha ha I haven't been in out in over a year nw so sad if I have a drink its in the house cos they say no old timers in are club lol.. Am glad somebody else is having a moan cos I feel alls I ever do is moan..

      I have been the same last couple of days in pain but my new thing swollen hands an feet driving me mad.. I hope there is a light at the end of tunnel cos if not I think il be looking for a body transplant lol x

    • steff0803
      steff0803 kirsty08752

      Posted

      I only ever go local so I can get home quickly if I get bad lol

      My pain the last few days has been excruciating. I feel like I've been in the ring with Mike Tyson.

      I'm the same with the moaning.

      It's all I do day and night. Everyone goes to bed early just to get away from me I'm sure lol

      I managed to clean the fridge out today tho. Was rather pleased with myself.

      Oh god how sad do I sound.

      It frightens me to death to think I'm going to be like this for the rest of my life.

      I just want a bit of normality back.

    • kirsty08752
      kirsty08752 steff0803

      Posted

      It's awful to think how we use to be an this horrible thing as just took over are lives without no bloody permission.

      I have been the same I sed to my husband am sure I went out last night an got hit by a train I think sometime we cud be better off going in the ring with mike Tyson lol...

      Hey that's a bloody good achievement in my books cleaning the fridge the only thing I have done today was get myself up how sad is that the worst thing is I enjoyed the house work an now it's a bloody chore just to get myself ready..

      My worse thing was I ad to ask my other half to dry my hair god I cud of strangled him he thought it was hilarious to go wild with the hair dryer an burnt my head the lil horra but he was rolling rnd in laughter never again as rather drip dry lol

    • steff0803
      steff0803 kirsty08752

      Posted

      Ha ha ha sorry Kirsty but that did make me laugh.

      It was an achievement for me. I've lost count of the day's recently I don't even bother getting ready.

      They're checking me for ankylosing spondilitis. When my back goes I'm literally just stuck in the same position until I can work up the courage and pain barrier to move. Last time this happened my other half had to pull my pjs up and down for me just so I could go to the loo. Hence the I have lost my dignity lol

      I feel sorry for the poor sod.

      He must wonder what an earth he has signed up for here

    • kirsty08752
      kirsty08752 steff0803

      Posted

      Yep am the Same I seem to live in pjs unless we have a hospital app or something planned which is then a trauma start getting ready 3 days b4 lol..

      Bloody help that's deffo not good is it ave never been that bad with my back mine goes now an then if I bend dwn the wrong way an just feel the twinge an then that's it stuck on the floor till it passes

      Ha ha deffo do agree with the other half thinking what they have signed up for God my husband as seen me in screaming like a baby is I can't move an he tries to help but doesn't no what to do but agree dignity certainly went out the window with this ave told him he can drop me off at the local scarp yard I won't mind lol

    • steff0803
      steff0803 kirsty08752

      Posted

      Yeah I've been there with the screaming. My other half panicked and run out to get my dad lol luckily we live close.

      They don't understand bless them.

      Do you get flare ups or is yours constant Kirsty?

      Mine seems to go away for a little while then it comes back with a vengeance.

      I have heard people say that it gets worse as the years pass. I hope this isn't true but I'm not holding my breath lol

    • kirsty08752
      kirsty08752 steff0803

      Posted

      Ano they don't bless them he always try's to get me to hospital an am screaming don't u bloody dare ha ha

      Mine is constant pain at the minute but to start off with it was just flare ups but got a lot worse but I think that's just because am not on the right medication as well

      I have heard its gets worse as well but am hoping not as well cos I dnt think I cud cope with that xx

    • steff0803
      steff0803 kirsty08752

      Posted

      I know it's so frightening to think what could happen further down the line. They need to do more research into it.

      It seems to me like nobody knows what they're talking about.

      The rheumatologist woman that I saw literally said. I think you have fibromyalgia, here's a leaflet, the doctor can give you amitriptyline. Have an X-ray and make another appointment.

      It's ridiculous. They drop this bomb shell on you then just leave you to get on with it.

      The amount of weight I've put on as well is ridiculous. I want to exercise but it's too painful the next day. I did some squats a few weeks ago. Oh my god. My legs did not approve. 3 days later I was still in agony.

    • kirsty08752
      kirsty08752 steff0803

      Posted

      I don't think half of them doctors no what there talking about I think they got there medical degrees in a lucky bag lol.

      I have found more information on here than any doctor as told me..

      Am the same I have put on 3stone in the past year an I hate it I have a multi gym an treadmill collecting dust but I dnt no which is worse that I can't use it or can't clean it lol x

    • steff0803
      steff0803 kirsty08752

      Posted

      Ha ha ha

      Oh the cleaning. The other half is having to step up to that at the minute.

      I'm a nightmare tho. I can feel myself getting annoyed just watching him do things. Why men have to make things so difficult is beyond me. I need to win the lottery and hire a cleaner. I've already got me dad doing me ironing. I don't think he would appreciate doing the cleaning as well lol

    • kirsty08752
      kirsty08752 steff0803

      Posted

      Ha ha ha god mine is the opposite he as ocd I think he is a proper clean finatic which is good ..

      I asked my daughter to do it one day while he was at work an God I wanted to scream ave never seen noting like it for a 16 yr old girl it was horrendous she didn't dust or do things like I would do I was sitting

      there tearing my hair out ha ha ...

      That's good ur dad helps out as well my family dnt bother with any support like that.. I have my lil super star my youngest he gives me massages on my neck and shoulders an it works a treat 😀😀

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