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All I have is pain

Posted , 11 users are following.

gilly2111
gilly2111

hi all. Iam sorry b4 I start. My fibromyalgia is the result of everything. ,,  so the docs say.  For nearly a year now I have had groin leg and back pain with pins and needles and numbness. The pain is unbearable and it is so debilitating iam off balance so much I don't want to even go shopping because iam scared of falling... I have head sweats for no reason I have had mouth ulcers cold sores face rashes constantly  and nothing is helping. All the doc says. Is that it's all part of my FM/ME/ CFS. Iam so miserable and depressed and fed up of all the pain. 10 years of pain has finally got me giving up on everything. No support or friends to turn to and my docs are a waste of time. Sorry for the first ant but I don't know who to turn to for help. Xxx

1 like, 25 replies

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  • lyn65518
    lyn65518 gilly2111

    Posted

    I really feel for what you are going through, just this week my doctor mentioned the fibromyalgia to me, I have been in terrible pain low back left side from rib going down to under buttock groin the hip and saccriallac joint, pain across shoulders arms are painfull and weak, hands are painfull, I have no energy tired all the time and fed up because no medication works, my blood result was raised showing inflammation, I am waiting to see what they are going to do with me hopefully send me to a rheumatologist , but this is going to take for ever, my physiology has sent emails to him but no reply yet, and with Christmas so near it will be ages before I get anywhere, it was nearly two years ago that I was taken to A&E because of pain in groin going round to back it was affecting my bladder then, had to go through camera in bladder and ultra sounds ct scans but I knew it was not the bladder, I am still getting bladder irritation now. I also have very gritty dry eyes have had sinus trouble and post nasal drip. Are you taking any medication at the moment? I hope you get some relief soon x
    • gilly2111
      gilly2111 lyn65518

      Posted

      Hi lyn yes every thing you are saying iam going through and more. 

      I just wish that evil illness had a cure or at least something to stop the pain 

      iam still waiting for mri results so will keep you updated on results. Iam off to the docs AGAIN today as my face eyes and mouth still has a rash and cold sores that won't go away. I hope you find some peaceful times over Xmas. Good luck and merry Xmas x

  • sadie1980
    sadie1980 gilly2111

    Posted

    Sorry u feel this way I felt like that to ! With no stop pain for over a year dealing with a newborn and two other children absolutely killed me along with nearly loosing my 15 year relationship. I tried all tabs until I was givin pregabalin to try along with amatriptolin and praise the Lord it has taken not all pain but most of it which is amazing! Do You take anything to help ?
    • gilly2111
      gilly2111 sadie1980

      Posted

      Hi Sadie. Yes I take pregabalin amitriptoline hydrocodine but it only takes the edge off the pain. It's like having tooth ache all over your body. Just takes the edge off but you know the pain is still there. Hope you have a pain free Xmas x
  • Boqer
    Boqer gilly2111

    Posted

    Hi Gilly

    dont be sorry for having a rant, it's what we are all here for 😊 

    It's really rough when youre in pain and don't know where to turn 😕 I phoned the occupational therapist yesterday to see if I could get some help with changing door handles (because these ones hurt mr hands to use) and with turning on and off taps, and also some advice in the kitchen. She wanted to know what Dr I am registered with, and as I have recently moved  I told her I am still registering, but having problems as they want a photo I.d. and I don't have one, so I'm having to send off for a passport which is going to take time, and by the end of the conversation she was quite annoyed with me as if it was all my own fault! I don't even know if she will be back in touch. So I will probably wrap something round the door handles, but it never ceases to amaze me how health professionals are really not understanding of our problems. Especially as for a lot of people, by the time they turn to them, they are suffering a lot of discomfort. So really don't be sorry for the rant, you should probably do it more often 😊

    Enjoy your day

    gentle hugs

     

    • gilly2111
      gilly2111 Boqer

      Posted

      Hi Boqer and Thankyou  I hope you get sorted hunny and have a pain free Xmas. I just see my go have done for years. I was diagnosed by specialist but have continued to see my gp. Well if I can get in to see her. I have to wait 6-8 weeks for appointment. So most times I just see whoever has the quickest appointment. Which I hate.then it can be 4-6 weeks. Iam not happy with my treatment but what else can I do. Thankyou to everyone who has replied to my post it gives me great strength x
  • charlotte1824
    charlotte1824 gilly2111

    Posted

    Have you looked into Lupus? Lupus causes the aches and pains like fibro or RA but it also has a chararistic of rashes and mouth ulcers, does any of your skin symptoms get worse after being in the sun? My rheumy thought i had lupus and he searched my body looking for rashes and he always asked me if i had any rashes or ulcers.

    Usually when you have back pain which send pins and needles down your legs it indicates a disc bulge or injury in your lumbar area. 

    Have you had tests for vitamin deficiencies? Lack of B12 amongst other things can cause tingling, numnbess and aches and pains.

    Have  you been checked for thyroid and diabetes?

    I wouldnt just lie down and take this, from what i know about fibro and all the other things i have read ulcers, rashes etc arent really a specific symptom of fibro, alot of people on here can probably say they have them too but that doesnt mean they havent also been fobbed of with "its your fibro" card. Fibro is this invisible disease that causes heightened pain, you hurt and feel like rubbish but its not visible. Rashes, ulcers etc are visible things and they relate to other diseases and also being extremely run down.

    Hows your bowels? Sometimes celiac disease and chrons disease can cause ulcers etc due to the lack of nutrients getting absorbed.

    Go back to your dr and ask for a battery of tests to rule out these other things, dont let them tell you its just fibro.

    Everyone is always so desperate for an answer as to why they feel like rubbish that they are happy to finally get a diagnostic name but unfortunately the drs then just use that as a get out of jail free card with any new symptoms, it really annoys me. 

    Good luck, i wish you well. 

    • currychic
      currychic charlotte1824

      Posted

      I thought that too, I havent heard of to many people with fibro to have skin rashes etc BUT we are all different i guess, I dont have many issues sleeping its when i wake up that i feel it. sometimes during the night i wake up with a really bizard feeling in my palms and soles of feet, you know that tingling some people get when they look down from a high place like that but more intense. you are giving good advise Charlotte i was thinking the same as you reading the post. Funny how some Dr's run you through all tests possible and wont accept you may have fibro and others run no tests and say yep its fibro. I think all other things need to be explored first, Gilly you need to get a MRI of your lower back for a start i think you may find a problem there. Good Luck
  • loxie
    loxie gilly2111

    Posted

    Firstly Gilly - BIG HUG.  I so sympathise.  Continuous pain with no light at the end of the tunnel is incredibly hard to cope with.  Then on top of this, as you say, a whole range of other elements of ill health seem to hit as well.  I've had hair loss, teeth loss (healthy teeth falling out due to bone density loss), viruses, cold sores, etc., too.  I am finding that each day is more of a struggle and an uphill battle than the day before - I've always been a 'coper' but sometimes it's like the spider in the web story - there are only so many things that get thrown at you that you can deal with, then it just gets too much.  My doctor says helpful things but in reality offers no support or treatment options - just a prescription for another pain killer.  For heaven's sake there must be a way of finding the cause for all this crap - at least if I knew the cause I'd have a better chance of helping the symptoms!  A rant on here can be helpful, dont ever apologise, we at least know what you're going through.  I've become something of a social outcast and I dont blame my friends, it's hard for them to understand just how unwell I am when there isn't a 'disease' name i can give them.  Fibro, ME, etc is still not understood by doctors let alone anyone who is fortunate enough not to suffer from it.  I lost a tooth last night, for no apparent reason - no infection, no decay, it just got loose and tender and then whilst drinking a coffee, it fell out.  I honestly thought 'this is the end of the line' I cant take any more of this sh***** and I actually shouted out loud 'LEAVE ME ALONE CANT YOU' to no one in particular.  I just seem to be falling apart in front of my own eyes and nothing I or my doctors do does anything to help.  I just hope that a pain free night with some good sleep will cheer me up enough to soldier on.
    • Boqer
      Boqer loxie

      Posted

      I'm so sorry about your tooth Loxie, it's so rough this fibro, I hope you have a better day today! 

      Gentle hugs

    • charlotte1824
      charlotte1824 loxie

      Posted

      Hi Loxie, Im sorry for you too, it is disgusting how it is just more and more pills but none help. Your teeth falling out is not normal, have you had bone density scans? Are you taking vitamin D or have you been checked for it? Are you on an antacid or anticonvulsant meds?? They can cause bone density loss. As can thyroid problems.

      I believe in everyone here including myself having pain but the more i hear and read im starting to think Fibromyalgia as a disease or condition is not real, they just changed the label from "not a clue" to "Fibro" and then every unexplained illness or symptoms is blamed on that. So many people are suffering i cant understand why this is not being researched to death. It may not be terminal in terms of dying but its certainly a life sentence of pain and suffering. Everywhere i turn there is charities or campaigs for dementia at the moment and although that is a horrible disease and certainly well deserved of campaigns and research why do i not see a dam thing about fibro, no ones visibly campaigining or researching, its not out there in the media raising awareness. 

      Why are drs not willing to do ALL the tests before they claim fibro, ive had a lot of tests for sure BUT i havent had EVERYTHING ruled out despite what they say. I havent had a vitamin test in ages despite past problems, I havent had hormones checked, I havent had thyroid tested in ages and a million other tests that i think could be worth doing as to rule out other things. My gp just knows i hurt alot and its just accepted as a fact, there is no wondering why from her.

      I do still get good days for which im grateful for but if I and alot of others here get good days then there is a trigger or a variable, if we are capable of a good day then the cause is not a permanent thing, there must be a way to fix it by tapping into whats going on chemically or brainwise on a good day.

       

    • Boqer
      Boqer charlotte1824

      Posted

      Well said Charlotte, I agree. I think if Drs don't know or can't help (or can't be bothered), it must be  fibro! They seem to think it's ok to give up trying to find an answer, if they were ever trying in the beginning that is. 

      And if we get good days, then I agree again, there must be a REASON for the bad ones, not just "fibro".

       

    • loxie
      loxie charlotte1824

      Posted

      spot on Charlotte! I have had my thyroid tested, apparently 'normal' whatever that is.  Never been offered vitamin testing.  I pushed for my testosterone levels to be tested after several years of complaining about abnormal hair loss and getting nowhere - my DHT levels are raised but according to the doctor not by enough to warrant 'intervention', so I went to a recommended health food shop and the guy there who is a naturopath, homeopath and herbalist recommended saw palmetto.  I've only been taking it a short time and already my hair falling out has eased off considerably.  I asked for a bone density test and she just said 'you dont have osteoporosis' - end of conversation! I recently read an article by an american doctor which basically slams doctors for perpetually treating symptoms and not underlying cause.  This is my biggest grip all the time - if the body is in pain, it's the body's way of telling you something is wrong! He likens symptom treatment to taking the batteries out of a smoke detector when it goes off, instead of finding out where the smoke is coming from and why.  Pretty good analogy.  He speaks of the habit of referral to individual specialists for each of the 'symptoms' and whilst each specialist will give effective treatment for that symptom, nobody is delving into the fact that all of these symptoms may be related and if the underlying cause is treated, all of these symptoms will be fixed.  Doctors are very well trained at treating symptoms - their best friend is their prescription pad.  None of them seem to have time to question a patient regarding their total health and approach it wholistically.  It's a rule at our group practice that you are not permitted to discuss more than one issue at a time - how ridiculous! Sometimes seemingly unrelated health problems can be attributed to one common cause but if you cant discuss them at the same time, ipso facto - one symptom gets acknowledged and treatment is offered only for that single symptom, the root cause still continues to fester somewhere unknown.  I know doctors aren't magicians but why is it that patients without any medical training can often find out what's wrong with them by research when a doctor either cant or wont?
    • loxie
      loxie Boqer

      Posted

      Thank you boqer - I feel a bit like a derelict building at the moment and every day another piece of plaster falls off or another wall falls down - i need underpinning and refurbishment smile
    • loxie
      loxie charlotte1824

      Posted

      I forgot to add - I SO SO SO agree with you that fibro is just a made up name to give a label to something they cannot be bothered to really determine.  Fibro = fibrous, myalgia = pain - yeh no sh*t Sherlock, thats what i have - fibrous pain - now find out please why and dont just give it a medical sounding name to fob me off!
    • currychic
      currychic charlotte1824

      Posted

      Great advise once again Charlotte. i thought fibro was an unexplained pain in the soft tissues not all these other symtoms people are talking about and i mean no disrespect to any of you going through this just trying to get a better understanding.
    • loxie
      loxie currychic

      Posted

      I am in agreement with you currychic - and as Charlotte said previously - quoted below - doctors do sometimes just label everything as fibro, it's an easy way out perhaps.: - "Go back to your dr and ask for a battery of tests to rule out these other things, dont let them tell you its just fibro.

      Everyone is always so desperate for an answer as to why they feel like rubbish that they are happy to finally get a diagnostic name but unfortunately the drs then just use that as a get out of jail free card with any new symptoms, it really annoys me."  

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