at my wits end

[Purple1968]

My story is a long story.Everything was fine with my GP and had a good gp/patient relationship-had full trust in him -until 2011 when he referred me to rheumatology because he thought my symptoms were something else besides my Fibromyalgia.The rheumatologist did nothing except tell me" you need to lose weight and do more exercise".neither this consultant nor my GP accepted that any weight gain was due to whatever is causing my abdomen to be so distended and wa s not diet related nor due to lack of activity.Ever since 2014 when another gp agreed to share my care with my own GP and whose only involvement was to investigate my abdominal symptoms which he failed to do.Ten years on and I still have no diagnoses for my abdominal distension .pain and other symptoms.The GP I have now who has been my GP for 3 years.is OK at times and not others.He has made referrals to several consultants and specialists but not al referrals have happened.ie to Gastroenterology who have decided they know me better than my GP does and in 3 years I have not seen a gastroenterologist despite GP referrals.

My Gp last year said he agrees I have symptoms of several conditions -Acromegaly,Pagets Disease of the Bone,Lupus(which has been diagnosed by another GP in 2021),and Orofacial Granulomatosis.Recently my abdomen has become more distended ,is very sore and lumpy all around and other symptoms include pressure against my stomach and a cough.It was assumed inFebruary that breathlessness ,chest pain and fatigue was due to angina.No tests were done nor any other possible cause considered

The only reason my GP did not make diagnoses was because "blood tests and scans " were wrongly confirmed as normal.All of these conditions can be sero negative ie not showing positive in blood tests or scans.

I have been diagnosed with Raynauds,disease,Fibromyalgia,Osteoarthritis,Costochondritis,oesophegeal dysmotility,Dysphagia,Gastritis,duodenitis,diverticulitis,Lupus and have symptoms of Acromegaly,Pagets Disease of the Bone,and what I suspect is Lymphoma.I recenly had a "memory block" when leaving the hospital.My GP for some unknown reason put it down to Sleepwalking??? I had no recollection of how I got from the first floor down to the ground floor.

Also have Dupuytrens(?)in my hands and feet which stems from post hand surgery.I have had carpal tunnel surgery on both wrists,

I am concerned I may have Lymphoma .I have a cough,nausea and vomiting as well as other symptoms.I have had several reports of enalrged lymph nodes and glands,Worst of all are my dogs and he changes in their behaviours.My female dog spends most days upstairs and being vey worried.more recently she wont stay in the same room as me.when I enter a room and she is in it she will run out into the another room.

I hav e done a lot of crying because I am scared I do have Lymphoma and it is not being taken seriously.No doctor is accepting that any weight gain is due to my abdomen/is IBS and not diet related.I have never had IBS yet it is still assumed.I am so concerned I am not going to be here for my dogs.

[rabbits65]

I feel worried about you and all that you’re putting up with. I too went to gastroenterology this year and had a scan with good results. Try going back to the gastro dept. and see if you can see someone else in the team. I too have two poodles and live on my own and it goes through my mind too about what if I’m not here. I hope you get some replies and I hope you get sorted out soon.

[Purple1968 in reply to rabbits65]

Thank you for your reply.Because The gastro's refused to see me ,I contacted the Colo-rectal consultant who removed my appendix and informed me that It showed signs of appendicitis.He agreed to see me face to face and said he would refer me to a colleague of his -an upper GI consultant.I recevied a letter today from the colo rectal consultant who said his colleague had referred me to a gastroenterologist as his dept .am awaiting that appointment,I have booked another phone slot with my GP to discuss Lymphoma with him.My abdomen is still achy and sore and this is now radiating right around my back.

[Purple1968 in reply to rabbits65]

Hi rabbits65.

So i spoke on the phone to my gp yesterday and asked to see him today which he accomodated .I felt it was a waste of time as once again my symptoms dismissed. Yesterday he said "i will chase up Mr H re a CT scan" and asked me today "do you want me to chase Mr H and Dr H up.?"Last week he told me he can request CT scan but today said he has to go through the consultant.Today i told him of my symptoms, -fatigue,weakness,pressure against my stomach,feeling full,discomfort around my left breast , inability to bend to do anything due to distended abdomen and pressure.I showed him the info on Lymphoma symptoms of the abdomen and lymphoma symptoms of the chest .The response was "you do not have Lymphoma"referring to a scan from2022 which said i had enlarged lymph nodes.I said i cannot eat or do anything that involves bending forward due to pressure against my stomach.I do eat because I need to.He also again dismissed my symptoms of Lupus-diagnosed by the GP i had before this one,symptoms of Acromegaly and symptoms of Pagets despite saying last year he agreed my symptoms were of these conditions -all of which can be sero negative -but said today as bloods are normal i cannot diagnose them.I came home -i could not help crying when i saw him-and have been crying ever since.I am never going to get diagnoses .

[rabbits65 in reply to Purple1968]

Oh my goodness poor you, on top of which you’re getting yourself all worked up , this is increasing your stress over it all. I have been just like you , it is just possible that things will calm down all on their own. What sort of drinks do you like, do not drink any fizzy drinks. There maybe something your eating or drinking that’s aggravating things , try and relax if possible. Worrying will not help your situation. Let me know, xxx

[DENZ01]

Good morning

I have a few disabilities, my main one when I joined HealthUnlocked being Spina bifida. However, over the years I've been diagnosed with other major problems & it has been a very testing time (no pun intended).

I have been accused of being an alcoholic (I don't drink alcohol 🤦), I actually was diagnosed with acute chronic pancreatitis! Then other gatro diseases!

I won't go on about all my issues as this is about what you're struggling with.

I think that you need to get a patient advocate. This is what I have done recently as I've been struggling with my GP.

Just do an online search for patient advocates who cover your area (I'll be truthful, I didn't realise that these people existed). It is free of charge (they're charity based).

I really think that you would benefit from using a patient advocate, it can be very frustrating & upsetting when the doctors are not listening to you! (I was recently told that it was my own fault that I'm allergic to a certain medication).

Please have a look online at patient advocates in your area, I think that going forward this may be the better option for you.

Good luck & I hope that I have been of a little help.

[Madlegs1 in reply to DENZ01]

Great idea.

Many people have found this very useful.

[DENZ01 in reply to Madlegs1]

Thank you!They have been really, really helpful and understanding with me.

Best wishes to you

[katieoxo60]

I am sorry to hear all your woes are not being addressed Purple1968. Here's a few ideas the bloated stomach could be many things including the less worrying IBS, we all have memory lapses now and again especially when under the stress of hospital treatment. You don't mention if you take any pills for pain ect which can in some cases cause symptoms like other illness. I have a lung condition and many pills cause the symptoms to be worse. in respect of your pets they often sense illness in their owner, so I would be trying all sorts to illiminate your own ill feelings if possible, because you seem to have a catalogue of illness and are now suspecting Lymphoma. You mention three illnesses that cause pain and severe tiredness i.e Fibromyalgia, osteoarthritis, costochondritos. So how do you cope with them I only have arthritis and the pain wears me down some days and many people even myself worked with the illnesses. My lung condition does make me tired too. What about asking your GP for anti sickness pills see if that helps one symptom. Pain is a personal thing what works for you depends on lots of things, lose of any weight will help the fibro and osteo I speak from experience only a few pounds can improve how you feel . I must go have to sort my own things out today ready to see the oncologist tomorrow early appointment. Best wishes with sorting your health out.

[Purple1968 in reply to katieoxo60]

Thank you for your reply.I know a bloated abdomen can be many things but mine is definitely not IBS which was assumed just because Ovarian Cancer was ruled out(2009).I have nev er presented with the symptoms of IBS.I did not take any prescribed pain meds because of my gastric conditions.I did take paracetemol but they did nothing to help with my pain so I use ibruprofen gel to help ease pain in my bones and joints.I do suspect Lymphoma because I now know someone who has it and Ihave not been given any reason for my symptoms.I nkow Fibromyalgia leaves me feeling fatigued and I also have been diagnosed with sleep apnoea and the masks did not work for me so now i have a monitor that sits at the back of my neck.I sleep 1-2 times during the day-before or after taking my dogs out and I feel weak when carrying even light weight shopping .My weight is nothing to do with my diet -In 2015-16 my weight fluctuated between11.3 an d 14 stone and all I got told was "that does not happen"-it is due to the mass that is my abdomen.I have little appetite and never feel hungry,get a feeling of fullness just eating a small amount.I dont eat cakes snacks or puddings and can only manage smallmeals .I have had about 5 episodes of losing weight unexpectedly and this has been from my arms legs and hips-never from my abdomen.In January my GP thought an attack of breathlessness was angina but did not investigate for angina.I have seen a cardiologist and have a CT angiogram booked in July to check my arteries.I have asked my Gp if he can arrange a scan of my abdomen -either Ultrasound and /or CT scan.Hope your oncology appt went well.

[katieoxo60 in reply to Purple1968]

Hi Purple1968, thank you for reply. So you have ruled out IBS and Ovarian Cancer for your bloating , it sounds like it could be digestive issues like liver, pancreas , ulcer . What is the mass in your stomach ? I would be asking ? The Fibromyaligia would make shopping a tiring task just like my lung condition does. The tummy swelling could be due to the heart so the test you have booked in July should rule out or confirm if its a heart issue which could maybe be treated . You could even be like me with more than one issue impacting on others . Drs always go for one diagnosis at a time, and treat, never think of issues being intertwined. Good luck with your heart check in July . I am supposed to start radiotheraphy next month some time on my lungs . The side effects are horrendous & not a cure. KIdney disease can cause varied symptoms too and cause weight fluctuations so can Thyroid problems my late hubby had thyroid problems from in his thirties but just had to take tablets and have blood tests . So I truelly hope you get a chance to move forward soon with a proper diagnosis. My appointment went OK but the patient transport let me down and it cost me £31. 10 to get home. Its so unfair how the system works. Take care

[Batty1]

Have you been checked out for Female problems? Ovarian cyst can grown so large it makes you look pregnant and causes a lot of random pains as it presses.

[Purple1968 in reply to Batty1]

I underwent tests for Ovarian cancer/cyst around 2009 over two year period as my abdomen was so distended.,At that time there was a lot in the media of women with ovarian cysts not being detected and causing them to "look pregnant"and I had put that to my then GP.My CA125 was raised for most of that two year period before levels dropped to almost normal.

[Batty1 in reply to Purple1968]

I actually was diagnosed with ovarian cancer because of the massive cyst I had removed grew back almost immediately … upon further examination of the second cyst removal and CA125 test being done and elevated and then multiple visits to a women's cancer hospital I had a hysterectomy … it was a long year nightmare that actually ended up being a walk in the park compared to thyroid cancer.

[Bantamdyno]

Hi, Googie haye diet,I noticed a difference staightaway and improved slowly over the years🤔🤔

[LindaC]

This is so awful - I had the distended gut thing for several years and got nowhere. Told IBS... all a waste of time. Spent a small fortune on probiotics, eventually it went on its own. Horrific times and I really feel for you. Take care and be well. xox

[Purple1968 in reply to LindaC]

I was admitted to hospital in 2021 after experiencing chronic abdominal pain -it woke me one night and the paramedics would not take me to A&E.A week later I woke in the earlyhours with the same pain and again the same paramedic did not want to take me to hospital.I spent the weekend in hospital awaiting a scan and when I was given the discharge letter it stated "IBS and gallstones",I told the doctor I had never had IBS and it should notbe in my records and as for "gallstones" I had my gallbladder removed in 2013 because of gallstones.It turned out Appendicitis was the cause and this was missed by the hospital doctors .this has been going on for over 12 years and still no diagnosis.

[LindaC]

Why would they not take you to A&E, twice!? IBS... I heard was a diagnosis of exclusion of other things! No gallbladder but gallstones... what are they like!? Make it up as they go along.

Wow - I was told IBS years back... no meaningful signs. Yes, I too have a long term gallstone and my appendix was removed January 2022. Take care and be well. xox

[PainConcernHelpline Moderator Community Champion Pain Concern]

Hello Purple1968,

It sounds like you are going through a lot at the moment and I can understand your concerns. I was pleased to see you have already received support and ideas from others.

I wonder if our self-navigator tool would be of help. It is a tool that encourages positive communication during healthcare appointments and more information can be found here: painconcern.org.uk/the-navi... There is a downloadable form, which you can complete prior to a medical appointment and this acts as a guide of what to focus the discussion on.

- Pain Concern Admin

[Purple1968 in reply to PainConcernHelpline]

Thank you for that .it is very useful.I will download the form for when i see my GP next week hopefully-have a telephone slot booked).

[Purple1968 in reply to PainConcernHelpline]

Dear Admi

I downloaded the forms but feel they will not help.My GP today persisted in dismissing my symptoms and 3 years with him and 12 years on from when the only good GP I had who took me seriously referred me to Rheumatology who did nothing .I still have no diagnoses.I have sought to finding info on my symptoms/conditions on NHS websites only for GP to fob me /them off.

[PainConcernProjects Partner Community Champion Pain Concern in reply to Purple1968]

Hello Purple1968,

I am sorry to hear that you feel your GP is still dismissing you. I can see you've mentioned looking on NHS websites for information on your symptoms and conditions. I wonder if you are aware of other information on the nhs.uk website, such as:

nhs.uk/nhs-services/gps/reg... (this can depend on catchment areas and if they are accepting new patients)

What I found helpful when I felt dismissed by my GP was locating the medical practice's complaint policy on their website and writing in about my concerns. In my case, fortunately my concerns were addressed and I felt listened to. Please take this as intended - me sharing my previous experience and not me telling you what to do.

I hope you are able to find a solution where you feel less dismissed. I know from personal experience the effect this can have.

- Pain Concern Admin

[OSTEOARTHRITISRA]

Hi another option maybe worth a try If you can get an

Advocate

To go to an appointment with you

they Advocates go to appointments with you to get your voice heard

and they do tend to get results and

Gp s etc tend to listen more and are used to seeing an advocate on occasions

You tend to get referals and results

It's finding

an Advocates in area

Sometimes there's even leaflets in the surgerys