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? 

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  • Posted

    I know it weighs heavy on my hubby, ive tried explaining and even keep most things from him. Ive always been the sort of person who hates crying in front of ANYONE, but I just dont know how to protect him from the most if it? We have our moments but never is it bad enough that we would part ways. Strangely enough i think i would give up before he ever would. We have been married nearly six years now, since i was just 20, and a lot of people said i was too young but i have never regretted it even for a moment. He, my step daughter who is 12 and our two boys 6 and 4, are the best thing thats ever happened to me.

    When i was 6, my dad got badly burned in a garage fire. He was in the hospital nearly a year before we could have him home. When we eventually did get him back home he needed a lot if care. And my mother (another tragic tale of neglect, to the point of being starving and dirty and cold all the time while my dad worked as a self employed mechanic) having walked out the day after the accident leaving 5 children to be split up between aunts and uncles, wasnt there to help. So the care aspect fell largely on us children. A few years after that he got diagnosed with testicular cancer, yet again the odds werent good, and the recovery was a long process. After that he suffered with pancreatic pains for nearly a year and a half, before we finally could take no more of his suffering and stepped in to take him to another hospital, where he was pulled into emergency surgery as he had a blocked bile duct, which had eroded and the bile leaking out was shutting down his organs. Before he could fully recover from that he got tuberculosis which nearly claimed him yet again, and left him at just 6 stone on leaving the hospital. My dad is the same height as me, and im 5ft 9...... And less than a year after that he was in for another op, that had 50/50 chances of him pulling through as he had a cyst on his pancreas and couldnt eat. Now he is waiting on tests as they are afraid he may have bowel cancer..........

    I guess what im trying to say is that im no stranger to caring for someone. But the whole time with everything that he went through, even his 6 year old daughter having to put cream on his dry and cracking burned skin, and hearing his screams when the nurses came to change the dressings, not ONCE did i see him cry in front of me. 

    Now im having health issues too, which i didnt want to acknowledge at the beginning. I am trying to be as strong as that for my family. But im afraid im failing miserably. Ive never cried in front of my sons, and have become a first class actor between home and work but sometimes it gets too much. 

    They didnt even give me the freakin injections! Said he didnt think it would help, and to wait it out for the osteopath, after he increased my meds of course..... 

    This 'little' outburst has rather drained me! Im quite sleepy now. That or its the meds working lol! 💊💉😉

    • Posted

      Kylie ~

      You have gone through sooo much in your young life.  I want to say something, and I don't want to lose touch with you, but crying isn't a sign of weakness.  I tried that avenue.  My girls learned more of compassion when I did finally release what felt like a lifetime of stress holding on to something that in turn would have made me bitter and angry.  So, one day, I cried and cried.  I was totally drained.  One day I heard a comment that crying keeps the head from swelling (swelling with bitterness anger anything).  I am now happy to say, I can wear a hat!!smile  I just cannot imagine what you went through with your father and having to deal with that, you lost your mother as well.  My heart holds heavy for you.  You sound like a very compassionate person and able to shut the negative part of your life out and concentrate on the positives, your family.

      Prayers for your father.  Truly he's suffered more than anyone person will ever know!  He's a force to be reckoned and in my opinion, has earned his wings to fly towards peace.

      Regarding the injections, ask again, and again, until he finally gets it.  Should he still reject this request, see another doctor asap!!  While I know it's definitely stressful to keep asking, my suggestion is that you phone at work and have the doctor call you back asap because it's not fair for  you to continue going and possibly paying a co-pay each time for him to say NO.  Should you chose this avenue, give him 24 hours to respond to your call.  This part is up to you, either call again or go see another doctor.  Kylie what part of the country do you live? 

      I cannot wrap my arms around you tightly enough, you are an inspiration to many and a fighter to all!

      Keep us posted as to how things are going, please?

      Warmly,

      Frustrated

    • Posted

      I got the 'too young' treatment too. My wife was 20 and I was 21. We have been married now over 50 years. Perhaps they were wrong? Wrong in your case too? I expect so.

      What a tale of adversity. It is hard being brought up with a sick parent. Being brought up with an absent mother I do not think I can even imagine. And now your own ill health. There is so little we can do. We can read what you write and respond as we are able. 

    • Posted

      Good morning kkylie,

      How are you this morning? However the pains are today please don't feel entirely alone.  We are here for you your virtual forum buddies and our warm enveloping virtual hugs 😃 for our NI forum buddy. Well! that's not quite right. Our hugs are virtual but frustrated and I are real - only the forum names are virtual. And the warmth of those virtual hugs are real. Mine are soso, you know what men are like, little boys only a bit bigger. Frustrated's are as warm as a plumpsious goose down downie after a good night's sleep with gorgeous strawberry and cream dreams. Yes, tuck that downie under your chin and luxuriate in it.

    • Posted

      Kylie ~

      I appreciate your kindness and caring dispositoin.  I brings back faith that there are special people out in the "small" world we share.  With the help of you and Doc and a few others in here, I believe I will be doing ok. 

      I have issues as we all have, I have a road ahead of me to fight off this sarcoidosis.  Funny, one good friend of mine after finding out I had sarcoidosis, she said "ahh, that's no biggie, it'll go away soon" then 5 years past and she said, well you should be fine anytime soon but surely by the 7 year mark.  Here it is over 10 years and it's only spreading not getting any better.  The thing is that bothered me with her remarks is I felt she dismissed the fact that, hey, look, I have oxygen, I cannot breath! Good gosh! it's pretty much everywhere on me and the dr suspects it's in my kidneys and liver.  I'll find out on the 6th, I'm going in for a a test to see just how much of the heart is effected and if I'll have to have a pacemaker put in.  Cardio sarcoid changes arrhythmias and I just may need that to jump me back.  I've been in the hospital w/i the past 2 months, 2 times for 5 days and 3 other times on a 23 hr stint because of my heart. I felt like it's a heart attack, although I've never had one, the pain was excruciating. 

      Back to my friends remarks, she based all her info on a paper her son in law wrote in college about sarcoidosis 15 yrs ago.  Oddly, when I told her that it's not a disease that can be studied because,yes, it does come and go, but not always...and that's very far and few inbetween so the medical field do not have anyone to do a complete study on for those reasons.  Why am I on this subject!  Must be a need for sleep!

      Hugs to you and DOC!

      Frustrated

  • Posted

    I live near Ballycastle, in Northern Ireland. And any kind of hug works for me!😆. You have been more than lovely just to keep talking to me, so i will def keep yous posted. It feels like a weight off, just being able to talk without judgement.

    you have no idea how much youve helped me already!

    Regards

    kylie 💞 

    • Posted

      Hi Kylie ~

      I am so happy you created this thread.  Just prior to entering this, I thought, ohh geesh, please, please have nice people in here.  And, walla! you created this and Doc showed up wink 

      You cannot know how much I appreciated you opening up with us.  That did bring tears, ok, and MANY tears.  My husband peeked in and said, wtheck are  you upset about and who are you talking to? I told him, my new boyfriend..of course he wished me well LOL dork!

      But, You cannot believe how much this one thread has helped me so much with exception one other thread and I feel I've met such nice, caring people. It's restored my faith in that while only approx 10% of the world is bad, do not forget about the 90%.

      I am also reminded that things can be said in a shorter version than I typically have done, thank you Doc!  I am going to leave and hopefully I've said something of substance.  Hope to hear from both of you soon!

      Frustrated <3 *hugs*>

  • Posted

    hi kkylie and frustrated,

    I am back for some eduction from younger, more up to date people. This is a discussion and I think I understand it - intoductory point followed by ancillary points, questions, replies etc. Then a second main point followed by ancillary points, questions, replies etc. frustrated refers to a thread. Is that the whole discussion or just the current part. And then there is blog. That in its original concept seems to have been a diary or extended monologue. Now, I cannot see the difference between a blog and a discussion. So I am missing something. Would you ladies help me out please?

    • Posted

      Hi kkylie and frustrated,

      You will see I have changed my photo. It is rather small but I don't know of any other way to show you the picture. My wife spent the weekend with our eldest boy's family and bought back this special little gift from my granddaughter. It is a chocolate heart with a scarlet lable cut out to fit perfectly. She writes, "Get better soon B. Because otherwise we cant tease you 😢 😃." She is a sweet girl and i have fun being teased by her.

    • Posted

      Hey good morning Doc!

      I will try to explain the difference between a blog and a thread.  A thread is open for discussion and information, whereas a blog  is for information without discussion.

    • Posted

      Yay! I did it in just under a paragraph!

      Regarding your granddaughter teasing you, something tells me you can do some heavy egg'n on, am I right? lol

    • Posted

      g'morning again,

      blog, information, no dialogue, like just look don't speak.

      discussion  read and respond.

      The thread moves into a different area but on similar topics.

      I think I'm confusssled myself!  Must go get some much needed sleep...yesterday 19 hours, you'd think this grasshoppa would learn...to be healthy, one must sleep!  When you have so much running through your mind, what do you usually do to combat that?  I do many things but the one and most important is to turn off all electronics an hour before you go to bed.  I envy my husband,he falls asleep in a matter of minutes, then the marching band struts through(Maggiemae, my beagle)and shake her ears..it makes a snapping sound and low and behold, he doesn't even budge. More melatonin?  Or free from any worries? I have no idea how that works.

      Well, I'm off to catch as much sleep as possible as my 2 yr old grandson will be here around 11ish.

      Luck and wishes and prayers for you, Doc!

      Frustrated

    • Posted

      Good morning, well afternoon realy,

      That is straightforward and I think I have got it. I started a blog on honesty and it is actually a thread. Ah well, I don't think the world will come to an end because of an oldie's mistake.

      You make me laugh every time I read that Doc stuff. 

      😄 I am glad I got into this thread.

    • Posted

      No flies on you frustrated, is there. Yes, she likes to tease and she cannot take any liberties with her father the way most daughters do. So I don't trim my eyebrows as she loves the threaten tying them up with pink ribbands. They are a bit like the mustache of a Holiwood Mexican villain - only upside down. 
    • Posted

      I expect Logan thinks he doing all your sleep for you. So just breath deaply and be happy.

      My wife and I were very modern. We agreed to do night shift, for twin boys, turn and turn about. It lasted less than a week. My wife woke up at the slightest sound from the boys. On my duty nights she got exhausted waking me up. So we played to our strong suits. She did the late evening and I did the early morning - I could not wake her up then anyway and I was awake as usual.

    • Posted

      Doc!

      HaHa, having 4 brothers who love to tease me to tears, I decided that if I didn't get a thicker skin, I'd be crying the rest of my life.  I found that quick come backs stopped that teasing and fast!  My daughters were just born with that "smart alec" attitude.  They are quick as lightening and my brothers as well as my father had a run for their money.  It became a battle of wits every get-together.  I always told the girls that it was ok to speak their minds, just make sure you're being respectful!  They are quite funny.

      Logan and family came home today. I suspect that it's going to be a long night for the both of them.  Maybe not. I just recall always worrying that I wouldn't hear them when they needed to be fed, etc.  We'll see tomorrow. I hope they are a bit more relaxed than I was.  I did tell my daughter that she should really take advantage of having extra help and get all the rest she can.  The laundry will always be there and so will the housework.  All can be done when she feels better.  C-sections do take a lot out you. 

      Well, Mr funny, aka Doc! it's time for beddy-by for me..it's now 1 am.  I look forward in your replies!  You take care and be well, my friend. Btw, if you don't mind me asking, where are you from?

      Warm regards,

      Frustrated

    • Posted

      Teasing and repartee can be a lot of fun, so long as everyone stops short of hurting. I still remember sassing back at my big brother so quick that I did not have time to consider it. It was just too true. To say I was sorry would just have rubbed it in the worse, but I have been sorry these 58 years since. He is a very nice big brother and he certainly didn't deserve to have me rub that bit of truth in his face.
    • Posted

      Where am I from, frustrated? I am happy to oblige. I think I have worked out that you are in the USA , you know, where the granddads are ladies!! I was born in the county of Fife ( hence Fifer ), Scotland. I now live in the south of England where the weather is milder and a little drier. I am British first, Scottish second and a Fifer third. 
    • Posted

      and eastern time. Here is anther 😄 or 😄😃. I hope you slept well.
    • Posted

      I am in the USA, specifically, Michigan, the "mitten" state surrounded by the worlds largest body of fresh water.  5 huge lakes. Lake "H"uron, Lake "O"ntario, Lake "M"ichigan and finally, Lake "E"rie.  Do you see any suggestions as to how we, as children, learned the Great Lakes names?  Also, we are the only State of two peninsulas!  An upper peninsula (know as the UP or Upers) and the lower peninsulas known as the "mitten".  Cool, eh?
    • Posted

      * largest bodies!  and no, I mean WATER lol
    • Posted

      I can see that the great lakes are HOME for you. 😀  How are you. Isn't it strange that sarcoidosis has in itself been no trouble, diagnosed in my brother when trying to support "farmer's lung" diagnosis and resolved with little treatment but gives you so much difficulty. It really is unhelpful to have your particular case poopooed so lightly. Believe it or not, Protate Cancer is poopooed as well and by medics. The mantra is "Oh! most men die with PCa not of PCa." One of the very few statistics that are generally available seems to support that - note SEEM  to support that. But there are key factors that are not addressed or possibly made available. Also the "Watchful Waiting" can avoid unneccessary treatment but some men find to their dire cost that their cancer has moved while they waited and the window of opportunity for a cure gone. Because it looks benine at one time it does not mean it always will be, or worse that undetectable tiny cluters of PCa haven't already spread. Respect is always due to such a cruel killer. Similarly the potential for harm from sarcoidosis is always there. 

      You both need a BIG 😄 after that gloomy shout with stamping petulant foot.

    • Posted

      Thank you Doc.  It is now almost 7:30 am.  I woke up an hour ago just to find my  husband left to help the grandkids get ready for school and off to the school bus.  I was flummoxed to say the least!  He said  he didn't want to wake me because I was sound asleep at last.  I could understand but I relish the chance of being with my g'kids anytime, anywhere. 

      Your post was intense, indeed! And I do agree wtih you totally about "watchful waiting".  I'm concerned because I'm never w/o a doctor and always being "tested" for numerous things that can go wrong with someone like myself having a compromised immune system.  This compromised immune system started in 2004 after having so many surgeries in such a short time, my body wasn't accepting the changes so quickly and was dx'd in 2005.  I've been fighting with this for many years.  Oh well, what doesn't kill us makes stronger, so they say, right?

      On a lighter note, my 2 yr old grandson was sitting and playing with a toy that my husband was joining in on.  I hear, (husband): how did you get so darned cute, (g'son) I dunno.  (husband) from your mother? (g'son) no. (husband) from your dad? (g'son) no.  (husband) From God? (g'son) yes! He has had no exposure to religion in any form.  (long story) .and no one has explained about God.  It made the hairs stand up on the back of my husband's neck.  In a good way!  So, with that little story said, I'm so very tired and must go rest once again.

      Take care and be well, my friend.

      Frustrated

    • Posted

      I hope you rest with a smile on your lips. What did we say yesterday about our children and grandchildren being gifts to help us from a wondrous Creator. Some children just KNOW. My youngest graddaughter, 9, knows and struggles to get to know him in her unreligious home.

      Rest sweetly 😌

    • Posted

      Hey you!

      I'm dwindling as I write this "last" post of the day.  While I said my grandkids weren't exposed to church, they were exposed to an extremly spiritual mother.  However, as a 2 yr old, she didn't really get into that with him, She's read books to him but that's about it.  Anyway, who knows what goes on in a lil ones mind!  Seemingly, with Nathaniel, it's spiritual lol

      Nighters, Puuullleeeaaazze, I hope I really mean that!  hehe

      Hugs cool

      Frustrated

    • Posted

      Hey!  Doc!

      I'm finally rested for the time being and feeling quite perk!  Regarding sarcoidosis, unfortunately, it's a disease that doesn't stand much a chance to be studied.  It is someting that does come and go for pretty much everyone but a small few.  I am unfortunately that one of the "small few" as it did go into remission in the lungs, it's clearly back with a vengence.  It is now in the middle section of the lung w/ damage to the lower.  I have it everywhere, skin, eyes (also sjogrens) cartiledge, ears, nose and now my heart.  Going for tests on the 6th to see what they can do as far as treatment.  Then will go to the pulmonologist for treatment.  Both Cardio and Pulmon docs will coordinate treatment.

      I'm so sorry to read about your situation.  Sending prayers.  How are things going thus far?  How are you feeling?  Just know, I am thinking about you and sending hugs and prayers.

      This is going to be a short post as it its already 2 am What!! how did this happen.  I haven't even answered all the posts.  Well, that can happen tomorrow!

      I wish you well and hope to talk soon!

      Frustrated coolcoolcool (I don't have any "hug" emotiocons.  Hugs!

    • Posted

      Hey, frustrated! Many thanks for that offering of yesterday. Here I am, just after my lunch wishing you a good morning about your breakfast time. And hugs, lots of them. You need them with sarcoidosis going wild on you. I had no idea. My run in with sarcoidosis was before internet, before personal computers, before we could find out things for ourselves. The worst, I was warned, would be that my lungs might get a little stiff when I was old and I might become a little short of breath, I do hope Cardio and Pulmon docs do something helpful for you. Yes all three of us are in a lot of trouble. Thank you again kkylie for starting this discussion. We can prop each other up and cheer each other in a way bystanders, however much they love us, cannot really do. (Remind me to tell you about a dear friend who is dying of cancer.)

       

      I am using my laptop so no emotiocons (am I out of date to call them ‘smileys’?).

       

      I am quite well. At this stage I have almost no symptoms from the cancer. The investigations and treatments all, without exception, come with risks and side effects that range from modestly unpleasant to very difficult and unpleasant to deadly this last rarely. The last is also inadequately admitted. Ugh! One has to get used to this bleak landscape. No point in sticking ones head in the sand. Should the Prostate Cancer run its full course, for it is usually quite slow in developing, the end period can be long and very unpleasant/ In many cases some other disease of old age steps in and takes the sufferer out of this scene. So thank you for your prayers. I am most grateful to benefit from them. I do not think the current stance in UK of preferring to have no screening of men will be sustainable. I expect it will eventually follow the progress of breast cancer in promoting screening of most at risk age groups. Meantime all men should educate themselves in PCa, and probably more importantly, all women should do so. The women will drive their men to get tests regularly. Early detection makes a big difference to outcome. Small but significant risk starts about 40. 70s are the peak years and 80s quite bad too.

       

      I have just recovered from a 72 hour virus (temperature, headache, crawly skin, feeling rotten, no appetite). I have the usual post virus fatigue added to the fatigue of hormone therapy. I am in the preparation stage for radiotherapy. I will let you know how my timetable progresses. In all of the treatments the outcome including the number and severity of side effects cannot be predicted. The experts tell you what might happen with each treatment, state their recommendation and then the patient chooses, be it for good or ill. You need a stout heart to have PCa.

       

      Indeed, I value your prayers. That said, I am weathering the hormone treatment quite well. Not much fatigue, and the hot flushes are modest (I bet you are laughing so here is a hug) but they bring memory problems and logic confusion with them. I have learnt to control to a great extent. Intimacy is confined to cuddles, I have little round breasts and I like a vase of flowers in my office. (Most of what I have written on the two forums have been on discussions for the Prostate Cancer Groups. Members of those groups are interested in exchanging details so as improve their understanding and getting help in making their own momentous decisions.) So keep those hugs coming. They are really, really important. Bless you both for being so kind. I am so glad to be part of this discussion in the Chat room.

    • Posted

      Dear kkylie and frustrated,

      I am back on my iPad and here are the hugs😊you deserve so well and that leave me feeling very ☺️ for it is a two way process.

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