Chronic pain in left side and chest

Other conditions
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Hi everyone, im new to this and have never posted online about my health. Ii was just wondering if anyone had any ideas about what could be causing chronic pain in left side because ive seen so many consultants and they still cant figure anything out.

I’ve had long term pain in my left side for the past 4 years or more now. I’ve seen various consultants yet no one has found a cause.  The pain starts in my side and travels to the middle of my abdomen and then to my chest, its so severe I can hardly stand up straight when it comes on. The only relief I can get is to lie down completely flat. No painkillers help. I’ve asked Gp about a steroid but she said she cant until theres a diagnosis ehich is baffling because I’m just supposed to put up with this pain? I would wish it on anyone its so sharp and stabbing and could come on one day and last a few days.

When this started, I can hardly remember but the usual thing was said: IBS. Also, along with this my abdomen is Chronically DISTENDED the whole time 24/7. I have problems with constipation/diarrhoea. It used to be a little swollen in the morning a few years back and as I ate throughout the day it got larger and larger, I have been tested for coeliac in the past, negative but I eliminated dairy and wheat etc at different periods and my abdomen was still distended, even if I didn’t eat for a day, I also tried vsl 3 probiotoics with no success. I have a very healthy diet. But this last 2 years it is persistenly Distended like I’m 5/6 months pregnant and it never goes away. It is so uncomfortable and looks terrible, my hib bones protrude with this.

In October 2013I had an ultrasound which discovered a mucinous cyst, which I was hospitalized for 12 days, diagnostic lap, but they never removed this, on the ultrasound it show I had a mass amount of subcutaneous fluid in my abdomen so this proved to me that it wasn’t in my head with regards to the distention and it wasn’t something I ate. I know there’s fluid there. The cyst was 12cm and it was stuck to my bowel and between the bladder. Ive not had any periods in over 6 years (I don’t know if thic could be realted). After this I was seen by gynae, gastro and a surgical consultant/ However nothing was ever done about the fluid, it was never drained or a sample to be tested was never taken?? My abdomen looks like a huge watermelon. The surgical consultant thinks that the long term pain in my left side and chest may be unrelated to the cyst which I had in oct 2013 as the pain is so high up. I just don’t know what to think anymore.

 I would just like to have a diagnosis of some sort because the  pain is so severe and taking over everything and im fed up guessing. The surgical consultant I saw in dec 14 has referred me to see a rheumatologist and then an endocrinologist because she doesn’t know what else to do. She thinks a rehumatolgist is the best road to go down as my mother has Lupus with sjorgens and raynauds etc and I have some symptoms. However I don’t have aches or anything, its severe pain in my side and chest. I do have a lot of fatqiue, cold hands and feet, persistenly dry eyes which are sore nearly on a daily basis, constipation and diarrhoea. Im still on the waiting list to see the rheumatologist but know they’ll probably not find out anything either.

My Gp has ordered bloods to test antibodies for autoimmune diseases now today also so I’ll wait a few weeks for results.

Tests/Investigations I had done:

·         Lip biopsy to test for OFG chrons

·         Colonoscopy

·         Barium Swallow

·         Endoscopy

·         Ct of Abdomen and pelvis

·         MRI of abdomen and pelvis

All clear.

Had blood test for lupus a few years ago – negative

Also, my Gp examined abdomen and said I have a spare rib on left side which she thinks could be causing neuralgic pain which could be costocondritis and may explain the chronic severe pain ive had in my left side and chest the past 4 years or more but when I told the consultant she just brushed this off. Anyone with any ideas would be great? Ive probably left stuff out but it seems so long trying to think of what ive all went through trying to find out the cause of this pain. Please excuse the length of this I hope someone has some ideas. And thanks to anyone who has taken time out to read this i appreciate it

 

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I wonder if the problem could be your spleen, with your mums history it would seem possible also costocondritis is seen in Sjogren's yet your lip biopsy was neg but so was mine! In fact I am negative for everything except an ANA! Are you double jointed? Or were you? I was Beighton 9/3 now I have had more colonoscopies and endoscopies than I can remember all negative and I am neg for Coeliac too! are you a member of the BSSA? I run a FB group for members as the BSSA doesn't do FB but our administration are all BSSA members I am Pam Newman so you are welcome to join. My Rheumatologist is a Sjogren's expert and likes odd people like me, and I am very odd, I have diagnosed myself with Hypermobility Syndrome and POTS and she agrees with my diagnosis so I hope to get to see someone soon as I have at long last managed to explain to my GP how odd I am!!! 

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Hi Pam, thany you for your reply, i appreciate it. 

When i saw that you wrote spleen, i remember reading about it before and though it was possible, but no consultant has ever mentioned it, is there a specific spleen disorder you have in mind, is it something that can occur with lupus also? Im negative for everything ive been tested for like you, its so frustrating! even though my lip biopsies was negative i definatey have dry eyes, not one day can barely go by without my eyes feeling like theres something in them, or inflamed, painful etc, my mum says mine are worse than hers. 

When you mentioned double jointed i was like no, but then i just remembered that i actually saw one rheumatologist before in 2011 though i forgot this until now, and she said i had hypermobility, that my joints were too flexible? I was never seen again by her but ... i will definately be keeping this in mind now. Can hypermobility cause pain?

No im not a member of that group, i actually doubted this past few years that my pain and symptoms could have been to do with the rheumatology end as i didnt have general aches and muscle problems,  i had my mind set on my pain being due to gastro issues because of bowel problems etc and severe pain in my side had me thinking i had inflammatory bowel disease-UC, but maybe im looking in the right direction now.

Ive also never heard of POTS before until you mentioned it, and i google it and it says  "It means symptoms that occur on standing and are relieved by lying down" this couldnt be more ME! I am definately going to look up this now and the spleen does sound possible to because of the postiting of where the pain strikes me.

Thank you so much for your comment and giving me some insight im grateful

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Hypermobility Syndrome is a combination of Hypermobile past or present, I was 9/3 now at 68 there is a reason why many Hypermobile folk were not found. In the 1960s 2 hospitals in London any a few miles apart didn't tell each other, one was investigating the causes, the other lead by Prof Beighton devising the scale. As a result the entire medical profession have not been taught that EDSIII/Hypermobile are the same thing! So nobody was taught and so medical student ever realised. It was then discovered that in this century so in 2013 a letter was sent out to GPs but as GPs are so busy only 10% know this at the moment. It is a dominant genetic imperfection of the connective tissue and SS and SLE are connective tissue diseases! So it is perfectly possible to be seronegative to SS as I am, as my problems come from from both parents. My mother had Psoriasis which has no blood markers, my dad had flat feet. My sons 1) SIDS at 11 weeks 2) psoriasis and mild Hypermobile!Beighton 3)Beighton 9 4) Beighton 4 IBS. I am very POTSy both from being Hypermobile, having a positive ANA, and from Hyperemisis Gravidarum with my last son. That was 29 years ago so very POTS I have forced my GP to try to understand, my rheumatologist is great she believes her patient and about POTS too so now POTS is going to be talked about at the next BSSA conference in October! Success except I don't have private health insurance anymore. When I did I was put through totally inappropriate operations which has left me a cripple!  If you wish to join my FB group British Sjogren's you are most welcome. We have loads of seronegative folk as I have been certain for some time that the classic group isn't the only group with Sjogren's which is why we go under diagnosed for years if not decades. Yes Hypermobility causes pain for 2 reasons 1) your joints may me Hypermobile 2) we bendy folk don't react to pain killers, dental anaesthetic, post operation pain relief, also our dental enamel is thinner than normal, we may have twisted roots, a small lower jaw, TMJ disorder, some have birth problems etc. so son 3 who had no dental problems before he went to uni except he had a binovater to stretch his lower jaw, now has multiple fillings. Son 4) had orthodontics  as did I at 13 seeing the very first orthodontist in the UK in the early 1960s. My present dentist and I are both furious as local rheumy took me off MTX injections because he never examined me just looked at my Seronegative bloods took me off the injections and not only nearly killed me, all my teeth have fallen backwards so all the work done so amazingly is ruined and my mouth is so sore eating is a nightmare. If you wish to join us I am Pam Newman on FB our British Sjogren's is administered by members of the BSSA the charity for Sjogren's as the BSSA doesn't do FB. I hope they will change their minds in time. 

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LOOK up POTS UK

LOOK UP THE BSSA this is the charity who give support to those with Sjogren's SLE and its attendant diseases. The BSSA doesn't do FB there are historical reasons, nothing to do with Sjogren's. I hope by keeping British Sjögren's full of facts, constantly asking member of BS to join the BSSA that they will. I and all my Administration are members and a lady who joined us a week ago has joined the BSSA, many in our group are BSSA members. The BSSA have an annual conference and this year at the conference in London they will be discussing Sjogren's and POTS so it will be most exciting. My consultant is the President of the BSSA. 

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Ive already been looking up about POTS, it sounds very like me, but the heart rate/beats, im not so sure about.

im awaiting another ultrasound so ill be keeping my spleen in mind, because its around that area that i get severe pain. 

When i read about pots, its pain that is experieneced when standing up (which happens to me) but is relieved by lying down, ive told numerous consultants that the only way i cant get any relief is by lying flat. i wish i found out about pots sooner.

 

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*CAN get relief not cant 

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Yes that is common, it is either because if the upright posture, we were not designed to stand! Or it could be to blood pooling in your legs or both. If you have numbness or tingling it could be both.