so frustrated

Posted , 6 users are following.

Ive had lots of issues over the last 6yrs. Pain all over my body, numbness and tingling, headaches, fatigue, weight loss and gain etc. I was diagnosed with fibromyalgia and hypermobility syndrome in July and referred to physio for some help with pain, only to be sent back to the doctors for more tests as he thought there was something else underlying that had been missed. Now im waiting yet again to see an osteopath and have an MRI done. What are they checking for? Im so frustrated and upset about the whole process its really taking its toll on me, has anyone else experienced this sort of thing? 

5 likes, 129 replies

129 Replies

Prev Next
  • Posted

    Thanks everyone for listening and the advice. Its nice to talk to people who are going through similar conditions because you understand what im going through mentally AND physically! I will deffo get them to check the ANA. In fact ill call today and ask. Writing a quick post as im heading into work now so ill elaborate a bit more later! 

    Warm regards 

    Kkylie xx

    • Posted

      And thanks to you too, Kkylie. I expect we all, men and our faithful caring ones, would echo that sentiment. It is balm to read your words.
  • Posted

    I meant to mention about going on to the ms advice sites earlier, but didn't have time George. It took me years to take the plunge and discuss my problems on-line. The first reason being that I didn't want to complain, and the second being that many more people are going through much worse than I. I was also confused as to where to go as I'm still not sure of all the conditions I have!

    I have no idea if I actually have ms, or if they're checking me for this condition. Although I have many of the symptoms and complaints, they could be caused by a lot of other disorders also, so I didn't want to poke my nose in where it may not have been wanted either! The amount of times that I have confided in someone and they've called me a hypochondriac has sort of knocked my confidence in believing that someone would actually give a monkeys what I'm going through lol!

    I only ever speak to my husband about it when I am really suffering....... you guys may be the only sensible and experienced folks that I have who could give me good advice and a shoulder to cry on. I have only just realised how lonely having conditions like this can make you feel😢

    Cheers! 

    Kylie

    • Posted

      Dear kkylie, you are very welcome to my shoulder. The hypochondriac slur is difficult and inevitably saps one's confidence. A soft answer might defuse the situation, such as, "If only it were." I hope the tests soon prove fruitful. Not knowing is the worst agony. I well remember how I felt the day I worked out that I probably had PCa and T3 at that. The ten days or so I suffered agonies waiting for the diagnosis meeting with the urologist. I felt so much better when I knew and just had to get on with this new factor in my life.
    • Posted

      i will send it to you later today, as I am off shortly to see my GP. It will be by private message, otherwise the system will intercept my reply so the moderator can vet the link. 😄 Sleep well.
  • Posted

    Frustrated-

    I wish you well in becoming a grandad! (Again or otherwise)

    Congrats to you and your family! 

    Warm Regards

    Kylie

    • Posted

      Thank you kkylie! I appreciate that!  Our little guy is here and healthy.  He's 7lb 12oz and 22 1/3 long...he's sweet!  Smells so good too!  I had to giggle when you wrote "becoming a grandad" because while my husband does accuse me of wearing the pants at times, he's the "Papa" and I'm the "Nana".  No worries as I love to laugh and even at my expense! 

      Again, thank you for your post!

      Frustrated

    • Posted

      Dear frustrated, O WOW! how marvellous. And don't infants smell GOOD. Mmmm In my household I am the one who is good with infants and my wife is excellent with toddlers. (yes I am the Granddad and I didn't need hormone therapy to like infants-3 children and 6 grandchildren over the years. Kkylie had me in a sweat as I had been writing to you as a lady. pheeeew! 'Granddad' O my, that is chucklesome. Kkylie, we are laughing with you. I certainly presume fellow forum members are men unless she makes it very clear she is a lady.) Is it too early for the little gentleman to have a name? I am so pleased for you, frustrated. I can almost smell the little fellow. He will ease the burdens and anxieties of PCa.
    • Posted

      George ~

      You most definitely have that right about babies smelling so darn good...with exception, after the big do-do kicks in LOL.  It is the same in my household, my husband loves the babies but the toddlers, not so much.  DOn't get me wrong, he does love all his grandchildren (now 8), 2 children, 1 with 7 and one with 1 (so far, they only just begun!), but running around after them, that frustrates him,(probably because they are faster, shh) lol.  [email]LOL@you[/email] both being in a sweat! That is so darned funny!  Fortunate for the internet, I can be both! lmbo! However, I assure you both, I'm the "momma" lol.  Okay, I'm clearly trying to outdue each remark I make, because I find myself laughting harder each time.  In any case, I hope just one of these remarks made both you and Kylie smile.  Laughter is such a "high" for lack of a better word.  I get great release from stress when I laugh.  I find if I don't have at least ONE session of laughter throughout the day, my head swells and I cry (one has to release the pressure somehow, right).  It's less wrinkles to laugh and so much more winkles when sad and angry.  Ok, 'nuf of those lessons.

      My lil' guy is Logan.  Quite fitting for this two syllabi family wink   George, he has already eased my anxieties!  So has this forum! 

      Great respect!

      Frustrated

    • Posted

      Frustrated, dear frustrated, you do me good. I smile as I read, a smile that expresses the balm felt so sweetly in the heart. Next time you see Logan, give him a kiss from me - and if the kiss is just a means of wrapping yourself in his sweet baby smell, well, who is to know but you, and mmm yes and kkilie and I will know too.
  • Posted

    Oh my lol! Sorry frustrated! 😯

    I am waiting in the docs now with my neck and shoulders. My fingers are even hurting while i type this, so im having a very bad day today. I get searing/aching/burning pains in my shoulders and neck which is very hard to deal with. But today I just cant seem to cope with it. Been crying like an infant for the last hour or so. Someone told me about trigger point injections and as im already doped to my eyeballs im thinking this might work for a change....... id try anything at this point im in utter agony...... 

    Sorry for being morbid folks, ive fallen out with my husband too as he is absolutely sick of seeing the doctors. So im literally facing this one alone 😕

    • Posted

      Hi Kkylie  ~

      I've had many "trigger point" injections.  They do help. Depending on how much level of pain you're in, my pain doc usually does those injections all throughout the particular area.   I surely hope and pray that it does work for you.  If it doesn't happen immediately give it a day or so and it should kick in.  After a day or so, if it doesn't kick in, you should phone the doctor and let them know when and if it did kick in at all.  I (now) always keep records as to when I get the injections, when it did kick in and when it seized to work; this will allow the doctors to either use more meds in the injections or rethink what they need to do next.

      I am so sorry about you and your husband.  I totally can understand that situation.  Being in pain, myself, for over 10 years, I realized this was taking a toll on my husband as well.  I wasn't clear why he'd react this way as he wasn't feeling the pain I was dealing with.  Then after long sessions with a therapist, I did come to fruition that unfortunate as it is, most cannot deal with a long term illness.  I did go to my husband and told him how much I did appreciate him being there for me and totally understand what he is going through. It's hard for those who are not in the situation as you and myself and George are in dealing with so much that we at times don't quite understand and would love to get away from it, if even for an hour.  This type of affliction changes people.  I'm sure your husband loves you very much but he's feeling a bit slighted with having his lifestyle changed so dramatically. Don't get me wrong, I was bittered at the thought he'd even "try" to make me feel sorry for him.  In the end, I did.  I told him if he would feel better with all this and he had to leave, then he had to follow what his heart was telling him.  The final of all this, is he was just having a bad minute/day/week/month.  However long it too for him to shake that feeling, it was ok with me because after all is said and done, I knew he'd always be there for me and me always there for him.  I guess in a nutshell, after being married for over 38 years, we know one another like no one else would and we shiver at the thought of "training" another lol.  Kylie, give him all the time he needs to adjust totally to this new situation.  Don't assure him you'll be better soon, just assure him you'll always be there for him when he's feeling so alone and down.  Make sense?

      My heart holds heavy with your situation.  Just know, it does and can work, even when things seem so bleak.  The part in your wedding vows "for better or worse" goes both ways.  It may be helpful, too, if you tell him this.  If it were him in your shoes, you'd be there for him until death due you part.

      Sappy, yes, real, yes and hopeful, yes.

      God Bless, Kylie and I wish you on the mend soon!

      your friend,

      Frustrated

    • Posted

      Kylie ~

      I did forget to mention, there was a point where my husband, like yours. was so sick and tired of seeing doctor after doctor that he even wanted to drop me off and let me fend for myself.  When things get that bad, it's time for an intervention.  Possibly through therapy for both or through faith for both.  Religion doesn't mean going to church, it means how one feels about it through your heart.  You can be a very faithful, spiritual  person by self alone, for me, church is a means of being with those who feel, share the same beliefs but the biggest that turned me away from church, was them always wanting more and more and seemed to lose direction.  I give financially to many different organizations, such as CASA, Michigan Humane Society ASPC and I support local needs.  I'm not saying "wow, I'm a saint!" lol what I am saying, you can give from your heart sitting on your sofa, too meaning "church" has always been with me in my heart and soul.

      As much as that sadded me that he'd abandoned me right at the time I needed him most,(sound familar?)  you are never quite alone or abandoned.  I'm not sure how much of a "believer" or how you are with your "faith", but prayer has gotten me through so much you cannot even imagine.  Keep believing your husband will change his heart, he will.  Keep believing you will get some solace with your pain, and you will.  Keep believing you and your husband will reconnect, and it will happen.

      I wish you the strength you need to get through this.  Being strong and asking for help, isn't a sign of weakness, it's a sign of strength.

      Again your friend,

      Frustrated

    • Posted

      Darn, one more thing.

      "I jump off my soapbox" and throw hugs to everyone razzrolleyessmilecool

    • Posted

      Darn, one more thing.

      "I jump off my soapbox" and throw hugs to everyone razzrolleyessmilecool

    • Posted

      Dear Kkylie

      I am so sorry to learn that you are having such a very bad day. I am sorrier still to learn that your husband is now letting you suffer alone. I know how much I rely on the loving support and care of my wife. I know I am the one with the disease but she is affected by it in all that she does. I also know from observation the dreadful additional pain when the husband withdraws his support. After many years of suffering, for my mother suffered from MS, my father ceased to care for her. Witnessing this added pain increased the pain of us four children heightening the ever present suffering of the household. I know this sorry tale cannot be of comfort to you, but I can say "I understand, at least to some extent", and along with Macmillan "You are not alone."

    • Posted

      And twice! so you really, really mean it. As one of us, or two us, or was it three of us said above we come to the forum in part for comfort. How good those virtual hugs are. I can't have too many.😄 😀 😊 There! that is better. 😊
    • Posted

      Now why couldn't I have kept it short and sweet to Kylie like you did, George!   sorry Kylie, when I'm long winded like that, it's a sign I'm feeling good! But, more often than not, shorter is better! smile
    • Posted

      Haha!  Doc wink  I have NO idea how that posted twice as I don't have that ability unless I write it twice....PROOF!  Divine intervention exists  lol

       

    • Posted

      And I thought mine was rather short, not like frustrated's fulsome epistle. Ah well, time for a hug in 😄😃😀😊☺️😉☺️😊😀😃😄 ah! that's better.
    • Posted

      Haha, Doc! you say it so well in little words! (I'm learning) wink
    • Posted

      LOL not "little words" haha! sorry Doc.  You say it well with few words!  Better?!  lol

      *hugs*

    • Posted

      Dear frustrated, 

      Thank you for those kind afirming words. Laid on my soul with many hugs. So rare a joy in this busy, over stresssed world.  So here are hugs 😃😃😃 of thanks to you frustrated, hugs of thanks to you 😃😃😃 kkylie.

      PS I think it every time I use your forum name, frustrated does not really suit the open hearted kindness you show us in this discussion. But do not think of changing it for it makes me smile - every time.

    • Posted

      Doc!

      You're going to make me cry.  That was the nicest ever! Thank you. I've been feeling a bit "unwelcomed" here (not in this thread) but a few others and you've just made my YEAR!  Thank you for your appreciation as I truly appreciate everything you have to suggest, ask, say, period!

      My name "frustrated" is a lengthy story but to shorten it, Everytime I put in a name, it was taken unless I wanted to add "name43112229994.  LOL I clearly would have forgotten it after the first 4 lolol.

      So, with each input of a "name" coming back as being already taken.  Guess what, I was "Frustrated"!!!

      Be well, my friend and again, thank you for your kindness.

      Frustrated

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.