I Need a Diagnosis!

Posted , 10 users are following.

Long post incoming (sorry in advance but any help would be a lifesaver!)

So, little intro, I have been in constant severe pain for 7-8 years, nobody has been able to diagnose me with anything in particular and it's getting steadily worse. I was hoping that some of you lovely people on here would have some suggestions of what to investigate next!

About me: I am a 27 year old female, never smoked, not overweight, don't drink, vegetarian, gluten-free (on the advise of my doc, just to try it out - it's done nothing for me!)

My illness: When I was 19, at uni, I came down with a virus (tonsillitis/Glandular fever possibly) and didn't go to the doctor (because, being a uni student, I had been a wee bit lazy and not registered with the nearest gp!) I was in bed for around 2 weeks.

Went back into uni when I was feeling better, had even been to the gym the night before, and when I was in a lecture that day, I went to pull my chair forward to let someone past behind me and I had a sudden stabbing almost tearing pain around my 5th rib, slightly to the left of my sternum. It was excruciating. My first thought was it was heartburn because I'd had that before, but it was like that x25 and whilst my little heartburn pains were usually over and done in a few seconds, this was constant. I went home and was again in bed for 2 weeks. I had to sit propped up in bed, couldn't lie down because that made it hurt more, and also couldn't eat much. I ended up going to A&E when the pain hadn't diminished at all after 5 days and they kept me in overnight, did some tests and basically said 'it's muscular-skeletal, it'll go away by itself'

Flashforward 8 weeks and the pain had gone down to the point where it was constantly sore and tender, but the stabbing/tearing pain would flare up for a few minutes or a few hours and then go. I can't really emphasise how painful this 'pain' is, but it stops me breathing/moving/concentrating/EVERYTHING. When I get the pain, the only thing to do is TENs machine and go home/sleep.

Now, over the next 5 years, it kind of levelled out. It was bad sometimes and flared up, and sometimes it was fairly ok, but still always very delicate and sore and prone to sudden stabbing pains. I tried having injections of steroids into the ribs, getting acupuncture, physio, massages, anti-inflammatory meds, gabapentin, EVERYTHING. The only thing that masks the pain in that particular spot is a TENs machine.

So I figured that that was just how it was gonna be and that maybe I could get the cartilage in that rib removed and we're all good. BUT... About 2 years ago, the pain in my ribs started to feel like it was wrapping round the rib cage. In particular, I have constant pinching pains in my lower ribs and in my side, almost a bubbly feeling between/under my lower ribs, the muscles in my side/back are so sore and have an almost nagging pain to them as well. My lower ribs also 'slip' - so when you poke the joint between rib and cartilage, they pop out of place with a really weird clunking sensation. They also do this if I breathe deeply or twist.

I've also had a bunch of ongoing digestion issues - indigestion, knawing pain in my upper left abdomen, constipation, this weird thing where I physically cannot burp and so I get excess air travelling in my throat and getting stuck ALL the time and it kind of groans + nausea. And the pains 2 years ago started in particular after me eating a big ol' cheesy mushroom burger and fries (which I barely ever do because I eat so damn healthy!). I had a sudden stabbing pain (just like the one I had 5-6 years before at uni) in my lower left rib and it radiated up (kind of shooting up) into the other spot in my sternum where the main rib pain is. And this lasted for around a week before settling again but the area was so weakened and painful from that point out and now my muscles around my lower ribs into my back are tight and sore constantly.

So TLDR; I'm wondering if this is all a digestion issue, is it just complex chronic costochondritis, is it both, is it complications with my hypermobility in my joints (that I apparently have quite severely), is it fibromyalgia or a connective tissue thing?? I have seen every specialist of doctor and they only focus on their one area of interest which means ignoring the bigger picture! It's infuriating and my life has been completely on hold for 7-8 years. All the things I've wanted to do in my 20s I havent done - i havent travelled, I cant have relationships (coz too much pain), I can't have the career I want and trained for and can barely hold up the really boring job I currently have. I'm just hoping that someone will recognise some of these elements and be able to point me in a direction!

Thanks! (and sorry for this MASSIVE post) xx

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  • Posted

    Could be gallbladder or gastro ulcer. problem Or if you have had an op or pain strain. movable rib addesions. Maybe you need a. floating rib removed ? You really need an MRI or Ultra sound scan your abdomen. 
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    • Posted

      Hi, thanks for your reply! I do have slipping ribs, the only issue is that they all do it! I have hypermobility so a physio I saw one time said that possibly that was what was causing a lot of the issues. I haven't had an MRI or ultrasound of my abdomen, I'll ask my gp.

      Thanks!

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  • Posted

    You are of the age where doctors are very dismissive of your health problems. It's unfortunate but there are a lot of doctors in the world who see a young person and can't believe that they would have anything serious beyond a cold or a little indigestion. Of course the whole time I'm reading your post and you're talking about your sternum my first thought was the costochondritis. And then you mentioned it. I don't see why it wouldn't be that so you might try joining a group on Facebook for support and ideas for treatment. I know there is one and you might be able to garner some information from them.

    There is also something that happened to me and it was in my lower rib cage like the last two ribs and below it and it was on my left side and the pain was horrible but... It only lasted 3 months. Well only is not right and it lasted a long 3 months. LOL But after seeing several doctors I went to my pain management doctor and she said it sounds to her like in an intercostal muscle strain. Intercostal muscles are what holds your ribs together but allows them to expand every time you take a breath. The only treatment she offered me was to do a nerve block to help with the pain temporarily. So I don't know what could fix your problem since you had it on going for so long but this is one idea of what it could be.

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    • Posted

      Hi, thanks so much for your reply.

      Yes the kind of general thing that the doctors seem to be working with is severe chronic costochondritis. The only issue is that I have all these other symptoms that flare up and make it all worse, but of course they could just be indicative of a separate issue I suppose?

      I've had steroid injections into the cartilage on several occasions but these didn't help at all. I always asked about nerve blocks after reading about them online but no one seemed to have any idea what I was talking about and one doctor weirdly seemed to think that I had just made them up! (He was quite patronising, all in all! haha)

      The main response I get when the doctors just can't be bothered to look any more is "well, you know it's not going to kill you, yes?" Which is maddening, to be honest! Like, no it won't, but it will completely stop me from living my life up until the point that I die early anyway because I can't exercise and I'm stressed out and in pain all the time! I mean, I do get that they're busy but... yeah, it's getting a bit ridiculous now. As well as the fact that there doesn't seem to be any pain management that they can offer me (other than Gabapentin, which doesn't help me because I guess it's not a nerve issue).

      Anyway! Thanks for your reply, I'll see if I can find out more about these nerve blocks.x

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  • Posted

    Have you discussed Lyme? Even if you’ve been tested and it’s come back negative you could still have it. It can cause a whole bunch of different unexplained problems. I had health problems for years and nobody could figure out what was wrong. The last one for me was awful left sided rib cage pain and swelling. I’d finally had enough of dealing with one problem after the next without an answer. I knew something bigger was going on and after thoroughly researching Lyme I was certain I had it. However almost any doctor will simply go by the test so I had to go to a Lyme specialist. It may be worth looking into seeing one. 
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    • Posted

      Yes but did you have it ? Lymes Im asking because I really started being worse my symptons in general last August 2017v . One day was just washing up and had my top off and suddenly these ring like marks appeared my skin like cigarette burns I just was watching them appear from know where all within 5 mins was very worried so went docs surgery because thought might be a spider bite insect tic as I have a cat .One them had bit puss coming out of it. When I saw my doc she dissmissed it as old age marks appearing but im not convinced why would they appear so rapidly my skin and for what reason All I know is all my health problems have been 100 % worse since they appeared.  Ok Im elderly 73 but my doc so dismissive to what I was saying because if just skin marks appearing like majic across my trunk and legs and arm s. within 5 minutes why did one have puss coming from it . Thats not anything to do with being elderly or  skin marks coming so rapidly My cat didnt have tics by the way. However since last  August have on going pain that they seem to have no answer for and ending up in AE. 5 times !! My main health symptoms are to do with my bowel and gastro which have become even worse had a colonoscopy yesterday again for my derverticulitus and bile dumping which causes me bad diarrhoea. Plus a ultra sound my abdomen Now wondering if I should have a Lyme desease test as feeling rotten and lost weight since laxt August and even today my lymph glands swollen in my kneck I also had shi es 18 months ago and a rash same place over 3 months ago like blisters itch Im not sure can get Shingles twice but. everything I say my docs gets poo pooed. Now under my previous consutant thank god . However because my doc hax poo pood my skin marks now wondering worth mentioning my consultant  as she has been kicking arse my docs surgery Obs shes arranged all these tests my bowel other within two weeks after months pain Funny that was refered back to her by a locum doc my surgery for a routine appointment and putting in a letter saying no red flag symptoms here joke notv After months dirthoea an. pain ending up in AE 4 times before Easter 2018 My records showed callrotection levels within normal limits my faeces but also showed some evidence of inflimation my bowel and ulcerative colitus. WAS NOT INFORMED BY THE LOCUM WHEN HE WROTE FOR REFERAL OR TO ME That was January 2018 when I said had lost a stone. gradually since August 2017and by October  2017 rapidlly. NO  RED FLAG.  Also if I had gone in there and said lost so much  weight and I was a smoket or an alcholic or drank alot alarm bells would been ringing RED FLAG. BUT I DONT SO YET AGAIN MY SYMPTOMS DISMISSED I often thi k should I take up both habits. Lol  
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    • Posted

      Apologies for text but really tired and sore after so many procedures yesterday . Hoping something turns up re my abdonem scan but on the other hand not if you see what I mean However I will ask. mention my marks my skin to be looked at by my consultant  as could be Lymes desease. 
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    • Posted

      Yes I did have it. He assumed I did just by my symptoms but send out blood work Tina special lab in California (not covered by insurance of course) where I did test positive. I too has the shingles at the age of 12 which was pretty much the start of everything. Everyone wondered why I had it so young but looking back my immune was probably weakened from the Lyme although I’m not sure how long I’ve had it. Your rashes sound to me like a bullseye which is caused from the tick bite. You don’t have to find a tick or tick bite to actually have been bitten 
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    • Posted

      I actually didn't consider it because I never had a rash or anything that I can remember. All the potential symptoms do match up with my symptoms, but I've never thought about it. That sounds awful, what you had, so I hope you're feeling better! I'll do some more research just in case it is!

      Thanks for your reply x

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  • Posted

    Have you been offered a nerve blocker such as Amytriptiline I only take one at night. 10mg I get reallly bad cluster headaches and searing pain and also though someones taken a pick axe to my head my hole skull gets sore at one point Allways on the right hand. sidevbehind my eye Its so bad I want to pullnmy eye out and hit my head against a wall . Amytriptilane stops the nerve ends being painful Also if really bad can take Sumatriptan over 3 days another nerve ending drug. Amytriptilyne you could take twice a day alot of patients I know and a freind mine takes a stronger dose for her Fybromyalgia and depression because Fybromyalgia is very dibilitating . Sometimes she cant even move and every movment hurts even rolling over in bed. Has good days and bad . You really need to get on top of this 7 to 8 years is a joke to far I also suggest you ask for a second opinon and be refered for a second opinion to a consultant . The other thing isvan earlier message by another reply good idia to get checked for Lymes desease . Hopebthis helps but I know to well if your in pain and no one nows why can lead to a circle of depression of thinking why me and off to bed and sleep. I dont smoke either or drink but have a significant problem my bowel and because I had my gallbladder out bile dumping causes diarrhoea and have a double wammy of having derverticulitus Just had another colonoscopy yesterday and gastro investigations my throat and last Tuesday an abdomen scan. . Hoping that in particular will show up something that is causing me so much unexplained pain My consultant checking my bile duct not blocked stones left behind after gall bladder op years ago. Good luck because I have had 4 years of pain from a keyhole appendixs op they used same scar entry to remove as from my gallbladder keyhole op and I get alot pain here and I believe adesions so hoping shows up ultra scan as this can make organs stick together often very painful like  your ribs . Ps time to kick arse your care for someone so young abbismal Im 73 and was an x nursing assistant so I been kicking arse because my sons say if I dont they threatened too as sick seeing me so ill.They seen it mw doubled up in pain and in AE .  My surgery has made many mistakes my care and even the hospital. I dont think docs take anyone over  65 seriously seem to think done nothing in your life while I been involved in the care sector for over 20 years  my life. . 
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  • Posted

    Ps sorry my missed. letters spellings a bit jumbled because awake now very sore from all my procedures yesterday but hope my reply helps as very long but wanted to reply in particular your on  going pain. as awake still. . 
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  • Posted

    Ps sorry my missed. letters spellings a bit jumbled because awake now very sore from all my procedures yesterday but hope my reply helps as very long but wanted to reply in particular your on  going pain. as awake still. . 
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  • Posted

    Hello there,

    I have to say how sad I am at your plight, especially at 27 years old. I haven't read all your replies, as some are as long as War & Peace. Quickly she adds, I'm sure you're grateful for every single reply, short or long, as I would be, in your quest for a resolution.

    Have you had an MRI & a CAT scan? If not, why not? Initially, like some other responders, I too, thought it was a gall bladder issue. Have you had a cardiac scan of any kind?  I ask because it's in that region of your anatomy. I suffer with terrible acid & bile reflux & the pain is off the scale. I've discovered (myself) that it's an incompetent cardiac sphincter. So I'm wonderingg if my medications would help you?! These are : Metoclopramide ( though an anti emetic, its side effect is that it aids motility), Ranitidine, Pantoprazole & Buscopan. Currently I am taking all but one, Bucopan. I've decided that I need a plan B if things go wrong. So far it's working! So you have nothing to lose by asking your GP for them, as they're harmless & do the trick.

    i also thought Lymes Disease, Fibromyalgia or gall bladder. However, now I'm thinking position of the heart in relation to rib, or maybe, similar to me, a digestive issue.

    Good luck, & please contact me for any queries, as I've been a nurse & midwife for over 30 years.

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    • Posted

      Thanks so much for your reply! I actually have had an MRI and CAT (and XRay AND bone scan) and the general summary from those really is that I have no inflammation and whilst I have mild scoliosis (which I didn't know about), there isn't anything structurally wrong. Which sounds crazy to me because it is so painful, it just feels like my ribs are being pulled out from my sternum, to put it bluntly.

      I just seem to have so many symptoms and they're all over the place. It's so strange as before this whole thing I was completely active and healthy (with the exception of a few mild bouts of heartburn) and wanted to do so many things that I just can't do now. Like, even going on holiday is a no-no with all the travel.

      I have got a mild arrhythmia in my heart, but it's an inherited thing that quite a few family members have and they assured me it wasn't that that's causing the pain. I also had an endoscopy and they found mild oesophagitis, but they didn't do anything about it or recommend anything so... 

      I'll definitely see if I can get a referral to a digestion specialist through my gp. I'm worried by this point they think I'm just some crazy person who keeps bothering them for referrals but I've almost exhausted every possible angle.

      Thanks so much again for your response!

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    • Posted

      Hi Wayward!

      One thing that stuck out in my mind is the fact that you are a vegetarian. I also am a vegetarian. I am wondering if anyone has checked your blood, calcium levels, iron, protein, etc. This might be a stretch, but maybe you aren't getting enough of some nutrient, which in turn is not assisting your body to heal from it's original injury. Maybe get your calcium and protein levels checked? Trying to think outside the box. Good luck!

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