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Please diagnose me - my life is falling apart due to this mystery illness.

(73 Posts)
Painengrained Sat 29-Aug-15 14:03:34

Please help me figure out what is wrong. I am stuck in the system of best guesses and waiting lists and in the meantime, my relationship is suffering, I have become depressed and have enquired (with horror and disbelief) about putting my disabled child into care as I am struggling to care for her. I desperately want to feel better. I will make this as concise as I can though its been a long four months sad

At the beginning of May I started having shortness of breath. I was newly diagnosed as Hypothyroid (autoimmune) and as a result, had been putting all symptoms down to that (had felt fatigued, had hair loss, aches and pains, loss of drive etc for months) GP checked me over, Levothyroxine dose tweaked, bloods good, was put down to anxiety. The year had been extremely stressful up to this point so I was inclined to agree. GP also gave me an antibiotic for a rash around my mouth.

The shortness of breath progressed to chest pains and very bad reflux-type-pain. I took gaviscon and made another appointment. I had been taking Tetracycline antibiotic for peri-oral dermatitis so thought it must be that. The day before my appointment, whilst still on the antibiotic, I felt quite ill. the right side of my body felt weak and I just wanted to lie down. Had to cancel all my plans for the day, family had to care for DD. GP checked me over, said it must have been a reaction to Tetracycline and I would start to feel better in a few days.

A few days later, the chest discomfort and weakness progressed to right sided rib pain. Back to the GP, convinced that something more must be going on. GP examined my abdomen, thought it was muscular but could be gallstones. Told me to try relaxation techniques as I could have been holding my body in a 'stress' position and referred me for a gallbladder scan.

Toward the end of May, I had what felt like a gallbladder attack. Extreme pain just below my ribs on the right side, pain going around and through to my back, right shoulder, neck and shoulder blade pain. DH took me to A&E. Bloods were normal, I was advised to wait for scan as surgeons were busy, told to go back if it happened again. It happened again, I went back, a different Dr examined me, thought gallstones as my right abdomen was 'guarding' and the pain was spasming/burning. A scan was set up for the following day, he offered to admit me but as my bloods were, again, normal, said I could go home.

Went for the scan, pain had subsided but was still smouldering. Gallbladder clear apparently, all abdominal organs looked ok. The only thing the scan picked up was that my common bile duct was measuring at the top end of normal (7mm). I was sent to surgical ward for a chat wit the 'experts' who said it was possible I had passed a stone, hence the CBD dilation. Following an examination, they diagnosed a probable ulcer an prescribed 4 weeks of Omeperazole (at a huge dose) followed by an Endoscopy if symptoms hadn't improved.

During the following 4 weeks, I had constant pain. It would peak and trough but was always there. It felt as if it were emanating from my right ribs, into my back, up through my shoulder blade, into my neck, into my armpit, down the inside of my arm, in my chest, even down through my hip and down my thigh. The whole right side of my body was suffering. I had severe constipation and nausea. I would wake at 3-4am in severe pain. Codeine made things worse, Tramadol made me feel very strange so had to discontinue, Buscopan helped a little, paracetamol was pointless and I couldn't take any NSAIDs as everyone was telling me I had an ulcer.

Through June I suffered, I have visited the GP almost weekly. I became increasingly desperate so they contacted the surgeons to set up an endoscopy. The surgeons refued and said I needed a stool test for H.Pylori bacteria. I had to come off the Omeperazole for two weeks prior to the stool test. It made no difference. The pain was the same, never letting up, I was becoming less able to handle it, weak from exhaustion and too scared to eat. I was devastated at the surgeons U-turn, I felt as if everyone thought I was exaggerating.

The stool test came and went, negative. Here I hit a low point, weeks of non stop, fluctuating pain, home life suffering, relationship suffering, exasperated and frustrated. GP referred me for urgent endoscopy which took another few weeks... in the meantime, I found a swollen lymph node above my right collarbone. I made the foolish mistake of googling, lymph nodes here are bad news. GP took bloods to check for inflammation and a full blood count to try and abate my fears as by this point I am extremely worried that something malignant is causing my prolonged pain.

I was also sent for an MRI on my spine as one of the GP's thinks I could have a trapped nerve/disc problem due to the - sometimes extreme - right hip pain i've been experiencing. I am waiting on the results of this. The hip pain seems to have come after the rib pain. if I stand for too long or walk for more than a few minutes, I get a searing pain in my right hip and down the inside, or front, of my thigh. I made the mistake of going for walk a couple of weeks ago and spent the night in agony with a leg that felt swollen and boiling hot but looked normal. I dont know if it is linked or as a result of my right side pain.

I had the endoscopy almost two weeks ago. Traumatic. And also negative. No ulcer, no gastritis, no cancer, no reason for this pain. The only thing it showed was some mild inflammation of my oesophagus. The Dr doing the exam said that would not be causing the pain that i'm suffering. The nurse looking after me said all my symptoms sound like my gallbladder. My bloods came back normal apart from a low Fibrinogen level which wouldn't be causing my pain (dr wants to investigate further but apparently it was low in 2013 too so isn't a new issue)

Last week I went back to the GP, with DH, to tell him that im struggling with life. I can barely look after DD, she requires constant care and I can barely function. Everything is an effort. I am in constant pain, couldn't sleep, hadn't slept in three months. He was very understanding, asked me to go over my symptoms and prescribed Mebeverine to take before meals and Mirtazapine to help me sleep, increase my appetite and 'lift my mood'. It certainly does help me sleep, it knocks me unconscious. And im eating everything in sight so at least I might put some weight back on, I lost a stone during this nightmare. He thought it could be Sphincte of Oddi dysfunction, which I've read is untreatable.

I have been urgently referred to Gastroenterology, it will still take a couple of months. A couple more months for me to google, to try desperately to figure out what the problem is and to worry myself sick. My worst fear is that it isn't going to go away, that this is my new normal. I cant stand up for long, some mornings I feel as if my pelvic bones have fused it hurts so much. The rib/abdo pain is constant but flares, the flares last days, it feels like there is something in there that shouldn't be or that something is inflamed. I am constantly bloated, sometimes painfully distended. Eating vegetables and meat seems to make things worse. My skin feels sore on my torso, possibly as a result of constant pain?

I do have Endometriosis but it has never felt like this. My gyne has agreed to do a laparoscopy to see if any has re-grown that could be exacerbating my pain, that op should be toward the end of the year. I am desperate for some relief, desperate to be a proper Mum and carer again. DH and I are arguing, we are both very frustrated. I am obviously depressed, I see no light at the end of the tunnel, whatever this is it has stolen our summer, it has stolen my ability to live my life. We have had to ask our disability social worker for a carer to help a few hours a week but DH is having to do the rest of DD's cares whilst working (from home, thanks to a very understanding boss) until she goes back to school. The holidays have been hellish.

I did book a private appointment with a gastroenterologist but realised we woudn't be able to afford any tests they requested so i'm having to rely on he NHS.

If anyone has made it to the end of this post, do you have any idea what is wrong with me? My life is falling apart, I am desperate.

lougle Sat 29-Aug-15 14:12:24

Have you had your vitamin D levels checked?

Badders123 Sat 29-Aug-15 14:14:31

Google dysfunction of oddi.
I think you may have that, especially if you have passed a gallstone.
Really hope you feel better soon x

Badders123 Sat 29-Aug-15 14:15:48

If I were you I would be going to a and e and not moving til I had a bed and they agreed to do a lap.

Painengrained Sat 29-Aug-15 14:15:59

I have, I'm not deficient. Also checked for Celiac disease, negative.

JontyDoggle37 Sat 29-Aug-15 14:17:05

I'm sorry I don't know what this might be but wanted to say I'm so sorry for what you're going through and flowers. I hope someone with more ideas comes along soon.

BloodyLeadStuckInSharpener Sat 29-Aug-15 14:17:40

Oh I am so sorry. I don't have any new idea. But couldn't read and not post. x

Painengrained Sat 29-Aug-15 14:18:11

I went to A&E with my mum a few weeks ago and did exactly that- begged for them to admit me. I was crying, my mum was pleading, explaining I'm a carer who can't care, that I can't eat and I feel ill, the Dr double checked all my results and said he couldn't admit me as I was clinically well. That was where I lost all faith in the system.

Badders123 Sat 29-Aug-15 14:19:44

I have never felt so ill as I did when I had gallstones.
The pain was awful, and I have 2 DC with no pain relief.
I was begging to Dr for morphine!
I had to go private in the end I'm afraid as on the NHS, they dint operate unless you are very ill (pancreatitis etc)
My "emergency" op was cancelled 3 times!
I went private, which was fine but the follow up care is poor.
My mum paid. I was desperate so I can really empathise with how you are feeling.
Do keep pushing for investigations.

JeffsanArsehole Sat 29-Aug-15 14:23:07

I'd pay to get my gall bladder removed.

It does sound like you have the sphincti thingie though.

Scoobydoo8 Sat 29-Aug-15 14:23:15

Being a carer is very stressful so I would speak to a Mickel Therapist.

SirVixofVixHall Sat 29-Aug-15 14:24:40

How horrendous. i am so sorry for you. This isn't helpful but I am hypothyroid, and I have some of the symptoms you describe. I do have a gallstone. Sludge in the gallbladder often doesn't show up on scans and could be a contributary factor with you. An underactive thryoid causes the gallbladder to becoem sluggish along with everything else, so often leads to stones and/or sludge and gravel.
You could have a private consultation, but then be ref'd back to the NHS for tests, that is quite common, I think that would be a good idea.

Badders123 Sat 29-Aug-15 14:26:11

Go private...beg, steal or borrow.
Or tell SS that until you have an op you cannot care for your DC.
I'm so sorry, it's awful they leave people in this state for so long.

Painengrained Sat 29-Aug-15 14:28:22

The pain I have never gets morphine bad, it's more constant and burning, the kind of pain that makes you not want to wake up because you know you'll have another day of pain as you try and suffer through the day. I'm worn down. I don't know what to do for the best, the healthier I eat the worse the pain gets so I'm eating shit which doesn't help in the long run!

I look awful. My eyes look dull, sometimes they look slightly jaundiced but liver function tests have always come back normal. My skin looks dull, I have dark circles and bags under my eyes that were not there in April, I have no energy. It's like an organ is rotten or I have cancer, I don't look well.

educatingarti Sat 29-Aug-15 14:28:37

So - I can't diagnose your problem but what I can say is this. I had the RHS under the ribs pain with occasional diarrhea and vomiting. GP suggested gallstones but nothing showed on scan. I was diagnosed with IBS and given spasmonal and omeprazole after endoscopy showed no problems.

YEARS later I ate a pizza and suddenly developed much worse symptoms of the same type. Eventually went to A & E on the advice of GP when tramadol didn't shift pain.

Nothing showed up on the blood test for gallstones and the A & E Dr wanted to send me home with paracetamol and codeine! I kept saying "I'm not willing to go home until the pain is under better control" at which point he said I couldn't be in that much pain because my heart-rate wasn't high enough and accused me of "just wanting to be admitted to hospital"!

I was admitted (given morphine injection which did help pain) and had an ultrasound scan the next day that showed bad gallstones. When I was operated on they said that it had stretched the skill of the surgeons to do it as keyhole surgery because the gallbladder was so inflamed and stuck to the liver.

Apparently gallstones don't always show up on blood tests if they haven't totally blocked the bile duct. I've no idea why they didn't show on my original scan but I'm fairly I had gallstones at that point because the pain was the same type and in the same place!

So I'd suggest a few days of eating as little to zero fat as you can manage - plain boiled rice is good plus fruit and veg. If it is gallstones the pain should ease though it might take some time if things are badly inflamed!

Painengrained Sat 29-Aug-15 14:30:47

scooby being a carer is stressful but it's a stress I've dealt with for 8 years. I love caring for DD, she is doing so well, is more interactive than ever. I was excited about the summer holidays and doing lots of things with her. The stress of caring hasn't done this to me. This feels internal. The depression came second to the physical pain.

PrincessMarcheline Sat 29-Aug-15 14:34:16

Gastrointestinal Reflux Disease (GERD)? I had this. The main symptom was terrible right-sided pain that woke me up in the night. I was referred to a liver specialist as they thought it was my liver. The herpetologist listened to my symptoms and said, "It's not your liver, love - it's GERD". I refused to believe it on account of not having heartburn. He gave me some pills and I slept through the night for the first time in months. The pain had gone. It was like a miracle. I am fine now.

Sorry for the essay, just wondering if you had considered GERD? Horrible word, but so easy to get rid of.

Painengrained Sat 29-Aug-15 14:36:48

Would GERD show on Endoscopy? The treatment for GERD is PPI's and I've tried omeperazole, ranitidine and lanzoprazole without relief. Have recently restarted the lansoprazole so will wait and see but I'm not very hopeful.

WanderingTrolley1 Sat 29-Aug-15 15:17:32

Horrendous, OP


peacypops Sat 29-Aug-15 15:22:59

I can fully empathise with what you are going through as I have been suffering with very similar symptoms since the beginning of the year and still trying to find out what is wrong. It all started with rib pain, breathlessness and more recently stomach issues ie.a gnawing sensation towards the top of my stomach. I also have a swollen lymph node under my jaw.It is really hard to explain overall how I feel other than that it is draining and I feel like something is poisoning me! Blood tests have all come back normal as has a chest xray and ECG. Finally after a four month wait I am going for a stomach ultrasound and gastrocopy next week. I was close to going private but it would have been so expensive. I am just hoping that I can find out what is going on as it is horrid trying to deal with it ever day. Sorry to hijack your thread but just wanted to let you know that I can share your frustrations. I hope you also get some answers soon x

WiIdfire Sat 29-Aug-15 15:28:05

Like educatingarti said, gallstones dont always show up on a scan first time. You cant rule them out until two negative scans. Perhaps your GP could request a repeat.

Badders - what exactly do you want her to ask for a laparoscopy for? You recommend pitching up to A&E and refusing to move without an operation, but for what? What odd advice.

ArendelleQueen Sat 29-Aug-15 19:40:50

Gallbladder stones are not the only cause of gallbladder pain. I can't remember the proper name of the scan but they ultrasound the gallbladder after you've fasted for 6 hours. You then eat a chocolate bar and they scan after about an hour. This is to look at what happens to the gallbladder after you're digesting fats.

The other thing that sprung to mind is Gastroparesis. It's hard to diagnose and you need a specific test called a gastric emptying study.

flowers for you.

Painengrained Sun 30-Aug-15 10:23:42

Have woken this morning with pain in my right hip, right pelvic bone, right flank, right shoulder blade, right jaw and a burning just behind my right rib about where the bra strap sits.

I can't join DH and DD on a day out. I've been stuck in the house all week. I'm so fed up. What is the point in getting up? I am so desperate to go back to how I was.

5hell Sun 30-Aug-15 10:31:53

I'm not a medic, but when i read your thread the thing that sprung to mind was a problem with your right kidney...had this ever been investigated?

so sorry you're suffering flowers

potap123 Sun 30-Aug-15 10:39:34

Message withdrawn at poster's request.

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