Please help, I think I'm losing my mind.

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hi all,

three months ago I was told I had a kidney infection and a kidney stone, after an really rough couple of days with what feels like renal pain I went to the emergency dept. I've just been told there is now nothing wrong with my kidneys and it's another thing that fibromyalgia has thrown at me. Then I was also told that the pain could go away tomorrow or never go away. Please is there anyone else out there who has experienced this or am I really losing my mind?

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  • Posted

    Hi Lisa:

    I don't believe I can help you but why is all these additional problems possibly caused by fibromyalgia?  Several doctors told me that it wasn't an autoimmune disease.  If that were the case, why did 1 rheumetologist I had treatment at, first put me on prednesone and after a year, my sed rate was still high.  Not as high before I was put on it.  I remember it was over 100 which is well above the normal likit.  A year later, I was taken off the medication and my sed rate was over 35, still quite high.  She then put me on methotextrate which I got sick from and taken off of it.  Then she was going to put me on embrel, humira or remicade IV.  All did not pan out because of the expense.  If fibromyalgiia is not considered an autoimmune disease then why would my doctor be describing these bio medicines which are used for autoimmune disease?  Here is another doctor who was a neurologist and after testing me, he told me I had CIPD and was going to put on Gamma Gobulin IV.  Now here is a med that is so costly.  Now I get different diagnosis and CIDP is primarily a bad disease.  I asked the doctor why would I have CIDP and what is it?  He said that it is an autoimmune disease where my nerves are constantly being damaged by my own cells.  The sheaths that are protecting them, is wearing away exposing the nerves which would eventually cause me some disaterous results.  I tried to get clarification and he beat around the bush a little but finally said, you can end up paralyized.  Nice to hear.  Now a few years later, there is no mention of CIDP but I do have nerve damage.  Sometimes I just don't know where to turn.  It's hard to believe doctors and I think some don't know.  It's like a guessing game and us as patients get the wrong results.  We are the ones to suffer for this.   If doctors don't know,who does?  In your case, you have kidney disease and kidney stones.  Can fibromyalgia really cause these things.  I believe a lot more research has to be done to adequately give a good diagnosis.  I am sure there are very good specialists but most are generally from the Eastern Seaboard where the best medical hospitals and clinics prevail.  If you don't have the money, no way could you afford to travel and get the best doctor available.  You would wait maybe months and possibly years to get an appointment.  Their expenses would be extravigant and insurance probably wouldn't pay for it or even some of it.  You are left out in the cold and miss up in getting the best treatment possible.  If you were well off or rich, that would be another story.  I really hope you can find out more and you more than likely have to do a lot of research to find out.  Getting doctors white papers or publications might be helpful but I bet you would have to pay for them. 

    mel

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    • Posted

      Hi Mel, wow it sounds like you really have been through the mill. Your right good health care is out of reach for many of us. I live in the UK and whilst we have free health care, we are unable to choose who, where or when we get to see someone. If I went private I could go wherever I wanted to and have a say in the treatment I receive. Don't get me wrong, the fact we have a free healthcare system is fantastic and those who work in it are amazing. That said I'm finding that if a Dr doesn't know the answer straight away then it's always attributed to either my EDS or as in this instance, my fibromyalgia. If I was told it was the EDS I could understand it as its a connective tissue disorder, but they said it was most likely the fibromyalgia. As you say it's not an auto immune disorder but I read an article a while back that said fibromyalgia could be caused by the protective layer on pain sensors could be breaking down. This is why we feel pain so differently. 

      All I know is I'm in a hell of a lot of pain right now and because I'm already on strong pain melds, there is nothing they can do. My point is given the amount of mess I'm on AND I'm still feeling this way, there has to be something going on. The thought that I may live like this long term is beyond what I can process right now. Since posting this someone has suggested a floating kidney and I have to admit that whilst unusual it sounds strikingly like what I've been dealing with, so who knows, I might get an answer eventually. 

      Good luck with your health and thanks for replying to me. 

      Take care, Lisa xx

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    • Posted

      Hi Lisa:

      Thanks for writing to me.  If something breaks down in our bodies and we don't have good cells to repair it, wouldn't that be autoimmune?  So really, if doctors say that it isn't maybe they are wrong or their is not enough information given.  I mentioned that one doctor told me I have CIPD.  That is definately an autoimmune disease.  Why would he come to such a conclusion such as this?  Why use scare tactics?  This is a worrysome thought.  This disease is connected with GBS or Guillian Bar Syndrome, a most terrible disease.  The very last rheumetologist gave me a bunch of pamphets on humira, embrel and Remicade.  He tells me to look them over.  It signals me that he wanta me to choose one of these medications and I would have autoimmune disease.  When I had a followup appointment, we talked for 30 min., being very nice and understanding, smiling he said that there's not much more I can do for you.  First he was going to put me on these biomeds and then not.  This is what I think.  Insurance is not going to pay for it and if they do, it will be about 50%.  Why even bother having medical insurance where I still pay premiums?  Several years back, living in CA I had that rheumi who also wanted to put on these things.  Here is 2 rheumi's and neuro who wants to do it.  I was always told that you a smart if you get a 2nd and even a 3rd opinion.  When all 3 say the same thing, what are you supposed to do.  Of course I don't want these biomeds because there are reprecussions possible.  You wonder if any of them really know.  Is it a guessing game which I think it is.  I think I told you that I had a spinal tap gone wrong.  Never did I have it repeated and I wont unless they put me out locally.  So, here is it is.  A rock between a hard place.  It's like were're trapped in this thing. Doctors neither have the time for us and write us off as a patient with no cure.  It does burn me to think of that.

      I don't know what a floating kidney is and yes it does sound unusual.  I have been detected as having stage 3 kidney disease.  Why, I don't know.  It shows in my blood tests.  Why at a stage 3?  What happened to stage 1 or even 2?  I am getting these standing orders every 2 weeks to check on it.  My levels are steady.  That is midway between 1 and 5, 5 being the worst where kidney failure prevails.  I am midway, not good but not bad.  Maybe that is why I have bladder problems.  I have to look up floating kidneys.  So here it is.  Where we go, nobody knows.  Maybe I just should resort to holistic means as just doing what I can to help myself.  Whatever will be, will be.  Also, good luck to your health as well. Like to hear from you again.

      You take care too.  mel and xxx

       

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    • Posted

      Hi Mel, I think the only thing I know for sure about people in our type of situation is that nobody, certainly in the medical profession, seems to really no much about how to treat us. To the outside world we look fine, therefore we are. To the medical profession  we're a mystery, a puzzle. They think either we're to difficult to treat and wash their hands of us, or more dangerously, we're something to practice, to experiment on. All this because we don't have the medical knowledge to make decisions on treatments and they can play God because we should be able to trust in them. At least here in the UK we don't have to pay for them use us as a guinea pig. I don't know which is worse being disposed of or being messed around with.

      Maybe one day we will get an answer, at 47i feel 87 so it scares me to think where I will be in another 10yrs. Just 8yrs ago I was fit, healthy, active and working. Now I'm drugged up on pain meds and using a wheelchair. How fast it can all change. 

      Well that was a cheery response wasn't it? Hope you get some answers soon xx

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  • Posted

    Hi Lisa your not loosing your mind hun. fibro throws so much at us,its hard to know at times when its fibro or something else going on.sorry your in soooo much pain bless you. I have had kidney infections but not kidney stones. Kidney infection was enough the pain I was in made worse by the fibro. Cant believe that theyve said nothing is wrong with your kidneys and that its fibro they want to make their mind up. what gets me is everything is put down to fibro. it cant all be down to fibro we can get ill with other things. once your labled with a condition thats it everything is put down to that condition.sending you a big hug take care very gentle hugs xx
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  • Posted

    Hi Lisa;  I know this reply is well out of date  (appologize as for some reason my windows 10 Deletes all messages from this forum, and I have to seek them out).  In  answer to your question re your ? kidney stone/s, from my knowledge re same, I would say that you Probably Passed the stone/s and that is why you had such Severe Pain....and then they could not find any (assuming that you had an ultrasound)??.......I have had Fibro for nearly 20 years (well retired from my profession for this condition), and have Never had kidney problems......yes I Occassionaly feel the symptoms of an urinary tract, and relieve these by taking an antacid (Ural etc here in Aussie land)..........but I would advise you that should you ever experience this type of pain again, go Straight to an Emergency Dept and get them to have another look via Ultrasound..............I am beginning to think that many are putting Everything down to Fibro, once they know we are suffering from this condition.???.............hoping that you don't have to go throgh this again, as I know many men cry from this pain "they say it must be what women go through during labour"....................good luck.....Bron
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    • Posted

      Hi Bronwyn, thanks for your reply.

      I have had a ultrasound which showed a stone was still present and an appointment was made for me to see a consultant who specialised in kidney stones.  In the meantime I was sent for a ct scan which despite continued pain showed no stones. Well I was really struggling with the pain and after a particularly bad week of pain and vomiting I went to the emergency room. At this point my appointment was still months away (it isn't until the end of May and this all started in November ) so as there seemed no end in sight I was prepared to be admitted into hospital in pure desperation. So during this trip to the emergency room I was told I had been given the wrong information and I did not and had never had a kidney stone that they could see. May I also add that I had also had a cystoscopy to look into my bladder as I had been passing blood in my urine and had had some small clots. Given that I've had a hysterectomy there was only one way for me to have these symptoms. 

      So here I am, I'm no further along, in fact I feel as though I've gone backwards. I still have this severe pain, which really is like labour pain when it's at its worst. I just feel a complete fraud, a bit like when I knew there was something wrong before my fibro diagnosis and no one could give me an explaination.

      I haven't been back to my GP for two reasons. Firstly I feel embarrassed and secondly he didn't know what to suggest other than try to see the consultant sooner which was refused by him, and then it was suggested I went to the emergency dept. So I've come full circle, still in awful pain and nobody seems to be able to help.

      Sorry it's such a depressing response but thanks again for answering.

      Take care, Lisa xx

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