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FRUSTRATION WITH MY AILMENTS

Posted , 7 users are following.

LUBYLOO
LUBYLOO

I am complex( diagnosed with Lupus, Fibromyalgia, OA both hips , had op on left knee after falling down 4 stairs , didnt work , consultant left , no follow on so I am shuffling around if knee dosnt lock !,had a TIA , and most recently breast cancer ) been coping with these for years , but recently my Fibromyalgia seems to have gone into overdrive , thought it was my Cancer , but Consultant said after tests it was Muscleskeleton , which leaves me with ongoing chest pain in a L shape , and various other "hot spots " , especially around my elbow . If it was a boil it would have been treated positively , you can see them , but these "unseeable" complaints take the back burner , medication wise anything from paracetemol , co-codomol , ibruofen , and gel , just wonder what else is going to appear and join the list , how I would love to soak in a bath for half an hour to relieve my symptons , but I cant get into one , sorry to ramble on , its one of those off days  xx

1 like, 10 replies

10 Replies

  • Bee70
    Bee70 LUBYLOO

    Posted

    Oh dear.....poor you.  Feeling for you.  Sending you gentle hugs from ME to YOU  wink xx
  • Misssy2
    Misssy2 LUBYLOO

    Posted

    Yes, I hate the fact that they don't have any testing that can specifically relate our pain and deteriation to Fibro...its frustrating and people think we are just  complainers or attention seekers (at least that is how it is with me).

    I HATE it....You  have a lot going on...you can't have someone help you into a tub?

    Or put a chair in the shower and move from the chair to the tub?

     

    • LUBYLOO
      LUBYLOO Misssy2

      Posted

      Hi , Shower over bath so thats not on , waiting to have my bathroom brought up to the 21st century , fed up with taking "pills" its finding the right ones to get rid of the pain for at least some of the time in the hope that the present flare up will get a little easier , everyone is different and different meds work with some and not others , have gone from me looking after the family to them doing it for me !!!!!!!! not what I had in mind .
  • Meg53
    Meg53 LUBYLOO

    Posted

    Poor you sounds like you need help, can you go and see a Specialist who will help with proper medication and CBT. Very gentle hugs.xxx
  • christine26761
    christine26761 LUBYLOO

    Posted

    Poor you Lubyloo, really feeling for you...hot water bottles are usually good...so is a warm indoor pool..sometimes just not accessible  though..I can't get in my bath even with the orooer rail...I have a shower with a seat...the local hospital arranged fir rails to be out I. My toilet shower and bath..soo good, only the cost of the equiptnent..a bonus..I in Australia though..might be different in other countries..I take OsteoPanadol slow   Release....too,,it's just the  paracetamol ..but it's stronger and still over the counter, cheap too..it's stays in your system once you get going..I have OA and Sjorens Syndrome too so it's good fipir them as well..I had key hole surgery in my knee three years ago now..I had torn cartledge..they took it out,,it was bone on bone.,it still feels funny today..,not painful like it was but like it's feels like a tight bandage is on it...it's not the best, considering it's hardly got any cartledge in it I suppose I'm lucky really, I have two legs and can still walk..do hope things get better for you really soon, Lubyloo-luv the name...be blessed, have a lovely weekend..:-) xxx
  • bronwyn97278
    bronwyn97278 LUBYLOO

    Posted

    Hi Lubloo;    yes I am really feeling for you, and you DO have a right to "what others may call whingeing"....to me it sounds like sheer frustration, and have  a Right to ask these questions, and state how you are feeling......I think I'd be jumping up and down louder............and No, you Certainly don't seem to be getting the right meds for all that you've had, and still feeling............have you visited a Rhuematologist?, for I really feel that you do need to have your meds changed.........you must have had stronger meds for your cancer (how/what did you use for that pain?....for am thinking that as I am so adequately covered for my pains, with SL Oxycontin 20mgms added twice daily, to my other Fibro meds, that this may help?  It is stronger, and more effective (and longer lasting than Co-Codomol or Tramadol -  which others take)....would you consider trialling these.....yes I know others will say, they are addictive, but to me, I just want some quality (be as pain-free as possible) of life, and be there when needed by others (as has been my case especially this past week)......without my present meds, I would be as frustrated as you.....and it's not rambling....it's being honest, and to me, I think that if we were All really honest with the professionals, we may get More recognition???.....As to getting your bathroom "modernized up to standard", I have heard/read that others have got financial assistance to have these Necessary modifications made.......I guess it depends in what country you live, as to who you approach for this (in Aussie, I would go to a Social Worker/Occupational Therapist in the Public System and make an application for same).....they are trained to help people to be able to stay in their homes with the necessities required to do same.....hoping that I have not rambled on too long for you?????rolleyes​Bron
    • LUBYLOO
      LUBYLOO bronwyn97278

      Posted

      Thanks to you all for advice , Yes I have a rheumatologist , usual format bloods , questions , etc , etc , but untill this year just kept going , but things have changed greatly , I was fortunate not to need chemo etc for my cancer , just removal of nipple and a slice downwards into breast , so now its just monitoring and follow ups., I have had more pain with my Fibromyalgia than after my op !!!!, I have a low tolerance to meds so I often feel like a zombie , but no good feeling too sorry for myself as it doesnt take the pain away !! I am still ringing daily to find out when I can see a new consultant for my knee , my gp says no money in our nhs , but I told him that does not help me with my "dodgy" knee , but do they listen , its all about ticking boxes etc , heaven forbid  they experience any of our symptons , wonder how they would like it ! , off now for more pain relief , and a read of my book ,as getting out is not an option at the moment , but hey ho looking forward to improvement eventually. Enjoy the weekend everyone
    • christine26761
      christine26761 LUBYLOO

      Posted

      We are all with you in this LUBYLOO..your never alone...really hope you can see someone who will give you some proper help soon...talk, talk, talk your head off on hear..we all understand..you really have been through a lot more than most of us..try enjoying what's left of your weekend..be blessed..:-xxxx
  • hope4cure
    hope4cure LUBYLOO

    Posted

    Sorry to hear of all your health problems.. Im not clear as to what diagnosis you have for joint pain..

    Have you seen a rhumy. They can help with medications to help slow down the progression of OA in knee and hips.

    Do your xrays on you hips show OA.? Then it imoeratinpve to have hips replaced will eliminate that pain totally.also X-ray the elbow to get diagnosis for all the painful joints .

    knee PAIN ALSO what does X rays show OA .have you tried stem cell therapy on knee. Clinical studies show therapy and stem cell therapy help OA or torn  meniscus probably happened from your fall.

    is the cancer in remission? So sorry you have been thru so much and very happy your in a better place. 

    Your a survivor! Xxxx

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