To complain or not? That is the question!

[MALC19]

Yet again i come across a medical person that wants to blame my ME/fibro for a body issue! Can anybody give me your thoughts?

I have been under pain management for quite a few years seeing a specialist physio and her boss checking on progress every 3-6months. They were so kind and caring.

In September last year i had a fall that was quite strange circumstances.

It was early hours of the morning, needed to use toilet.

At the bottom of our bed we have a storage heater attached to the wall that i have to sidestep to pass.

I fell, i was suspended approx foot off the floor and wedged by my hips and arms, i could not move....hope i explained that right as its quite hard to explain.....i had to scream at my husband to help me.

I was in agony. It took husband what felt like forever to get me out, he didn't know which part of me to get hold of first. I was sobbing and just said no matter how you do it, it will hurt....he eventually got me out and just cuddled me.

This was 3 days before my nephews wedding (only have two, they are all the family i have left apart from my son and husband).

I used toilet and got back into bed and quietly cried for the rest of night with husband cuddling me.

I knew i had caused some serious damage this time but wouldn't go to A&E as they may have told me to either stay there or not leave home!! I couldn't miss my nephews wedding.

With ME and fibro we are used to pain so i just plodded on. I was due to go to pain clinic following week after nephews wedding so decided to just carry on until then with pain killers and every other remedy.

Fast forward.....got to pain clinic and told physio what had happened, she checked me over thoroughly and ordered MRIs quickly and told me off for not calling ambulance straight away.

MRIs showed i had damaged my sacrum and right sacroiliac joint and L1 of spine and had a lot of inflammation....i cannot take anti inflammatories due to colitis....they were referring me back to Rheumatology to see if they could do anything to help and to again check my inflammatory markers.

Anyway then covid hit.....my physio had to go on extended sick leave as she has fibro too bless her and her boss had left for another job which she told me about, so my support has gone.

I got a phone call from new pain clinic lead few weeks ago but at time of call i assumed it was Rheumatology and asked this guy if he was the consultant to which he said “yes”and spoke about an injection but they don't like doing them as they can cause all kinds of side effects. I was getting more and more upset as he talked on as i can hardly walk now due to pain...shooting pains down my legs constantly plus many more issues since this fall and told him so to which he replied quite flippantly “that is due to your ME and fibro, your sacroiliitis is very mild, and rheumy would not need to see me” he said more but i stopped listening!!

I received report only to discover this guy was new head of pain clinic not rheumy consultant!! He basically lied on his report and said we spoke about my options so would refer me back to GP for holistic approach.

I am so angry and upset with this guy and am not sure whether to complain to hospital about him, he has never met me or knows anything about me apart from what he can see on his screen.

Sorry its a long post but felt the need to explain it all. Am i being paranoid?

Can i get some advice on this please? What do any of you think?

Thank you for reading this post

MalC 😊😊

[desquinn Partner Volunteer FMAUK Trustee]

Rather than complain I would speak to GP about the proper way forward for you. I suspect a letter back to the apin clinic to explain that there appears to have been some misunderstandings and facts not considered. You think that the phone consultation was unfortunately part of the issue and once that you heard that the treatment that you were hoping would relieve your significant pain was not going to be offered you were not able to comprehend what else was being said.

State the things they have missed etc and put it as professionally as possible and ensure someone else reads it before it is sent. Attacking the person is not normally productive as option and looking to ensure your treatment options are appropriately considered is the best way forward.

[MALC19 in reply to desquinn]

Thank you for your prompt reply.

You are right. I did take it very personally in as far as i am in so much pain and hoping there would be an answer and quite emotional.

I had not thought of actually writing to pain clinic as could always email the team that had been caring for me for quite a few years but that option has now gone unfortunately.

I will try that option first and see what happens from that.

Thank you very much for your suggestions and support.

😊😊

[desquinn Partner Volunteer FMAUK Trustee in reply to MALC19]

Ask your GP about the correct way to go forward as they may be able to help.

Best of luck

[Dazakella2010]

Personally if this was me I would be on the phone to the hospitals PALS team! I would be discussing this with them straight away.... going backwards and forwards to your gp and being re referred to differed departments is going to take time and in the meantime you are suffering just because a professional that we are supposed to trust (I’m a nurse) is supposed to support you has decided to lie and not do he’s job properly.... PALS are very good and they will work with you and In my experience have got problems sorted very quickly.

I hope this helps.... never be afraid to speak up, this is your care and you should never suffer in pain. X

[MALC19 in reply to Dazakella2010]

Thank you so much for your reply and understanding.

I was trying to weigh up the pros and cons but brain fog clouding my judgement as usual and could not think straight.

I do have so many more issues since having that fall that i did not have before and did not know if having ME and fibro for a couple of decades now, whether they were just new problems from that or not.

Wish i had known about this forum years ago as the support and understanding that i have got and also given to others has made me feel i am not alone.

I will try pals first so Thank you 😊😊

[Dazakella2010 in reply to MALC19]

I understand.... I have been the same in the past, waited and waited for doctors, waited for referrals and given people the benefit of the doubt.... but unfortunately it doesn’t work that that most of the time now, you have to look out for your self and push for things, as bad as it sounds this is what it has come too.

I too have many medical conditions so I completely understand how you feel... I was diagnosed with fibromyalgia 8 years ago and in the last 20 months have been diagnosed with blood cancer which I’m currently on chemotherapy for, osteoarthritis in my spine, diagnosed with a liver tumour, intercranial hypertension, just been diagnosed with psoriatic arthritis and am currently under investigation for ms, I have more tests on 9th December, and now under investigation for heart problems. My mobility is limited because of all these issues and I can’t walk far at all, only a few steps. My life had definitely changed since I was 40 in January 😃 but I remain positive.

It’s changed me completely as a person but I take each day as it comes. I have 3 young children so I live for them.

It’s taught me never to suffer in silence....sorry to go on I just wanted to explain why I gave you the advise I did. X

[MALC19 in reply to Dazakella2010]

Oh bless you xx

Yes i have many medical issues too. So sorry to hear about your cancer. I had a partial nephrectomy in 2018 due to renal cell carcinoma, previously before that i had to have total hysterectomy at 37 due to cervical cancer after 3 abnormal smears and 3 colposcopy,s and biopsies on getting results i was given 6 days to sort out my affairs before they did op....i have to say i have been very lucky as they could remove all mine and didn't have to have chemo.

I do wish you all the very best as i know what it is like to hear them words and hope you stay well.

Please do not feel you went on as i understand and empathise and were kind enough to give me support and help.

I do tend to hold back when it comes to medical issues as i do not know enough and put my trust in medical people as everybody does.

Please take good care of yourself

😊x😊

[Dazakella2010 in reply to MALC19]

You have been through it too....

I too once trusted the medical profession until only recently when I was let down on many occasions.

Thank you.... please also take care of yourself and take it easy.... 🥰

[ShelWhitt in reply to Dazakella2010]

Hi Dazakella. So sorry to hear of your problems but all I can say is, that on the positive side you seem to be getting tests and some action. I really do hope you have some success. I have been struggling for over 30 years.... you don't really want to know, but make a start with complete hysterectomy for endometriosis and physio for bad back in the 1980's (No success there for a start) and it then went downhill from there. For the last three years I feel so ill and cannot get past the fibro diagnosis. Have tried most mediations, without any success, but can't tolerate the side effects any way.Have tried to keep away from docs during pandemic, but eventually had to give in and question the 'excema' patch on my scalp getting worse (two years with medication). Told I needed a biopsy with 28 week wait. No way could I wait that long. I went privately. Long story short - it was cancer. I had it removed five weeks ago. My Thyroid is also out of wack and I was trying to sort that prior to lockdown 8 months ago. That is on hold, together with all the other problems I am living with on a daily basis. All this whilst having my 81 year old DH with dementia, copd and really bad mobility. Onwards and Upwards. Unfortunately there is no other choice. Thank goodness for this brilliant site and all the caring people on it! Take care and stay safe. xx

[MALC19]

Thank you for your reply.

I could phone the new physio that had been assigned to me. I am unsure as to whether i could just speak to him or not or whether this guy that now leads the pain management would be answering.

I really do not want to speak to him again.

With my old physio i could just email her at any time to get some support so can i take the same route do you know?

MalC

[Dazakella2010]

You normally find once your discharged back to the care of your gp your gp will need to re refer you.

[Yassytina FMA UK Volunteer]

Hello, I’ve read your story and I agree with desquinn have a talk with your doctor ,especially if it’s your normal doc that knows your history and know you as a patient. Gosh that sounded so painful when you fell, I have cfs/fibro/treated sleep apnea, we are in a bungalow which I’m grateful for as my knee has gone down hill in the last year/half and quite often I trip over so added that to my list, I’m 59 . Glad you have come here to talk , it’s a really well run forum and I made some nice friends, I hope you got some good photos from your nephews wedding ?? to look back on , you did well to attend,let us know how you get on and take care xx

[MALC19]

Thank you for your reply.

Unfortunately cannot speak to my GP that knows my history as he is at another surgery at mo doing phone appts.

It really was so painful that fall, my hips, pelvis and top of thighs took the whole weight. Cannot tell you how long i was suspended from the ground but i do know i was in agony.

Don't know how i got through the day of Nephews wedding but really didn't move unless i had to. I cannot remember much about the day as i was in agony and dosed up on pain killers unfortunately.

We live in block f flats on 2nd floor with no lift so I'm pretty much housebound.

I am going to ring Pain clinic next week to see if i can get any help.

I have been asked to do a video conference with a group of other people that suffer with chronic pain and there will be doctors and specialists so that we can ask questions but not sure when that is happening, so will ask about that too.

Will let you know what happens.

Thank you all for your kindness and support.

Take good care of yourselves.

Mal😊😊

[Maud-ie]

Fibro is blamed for every ailment known to man! I finally got an MRI scan and turns out I also have bilateral sacrolilitis, spondyloarthritis and bulging discs at L3, 4 and 5 and erosion to my cervical discs. Awaiting first available appointment with rheumatologist in April 2021.9

[MALC19 in reply to Maud-ie]

Hi. Thank you for your reply.

Yes i do get really annoyed with medical people like that.

I know my pain threshold and where i get my pain. I have protruding dehydrated discs at C4/C5 & C5/C6 and osteoarthritis left hip and a myriad of other medical issues.

I want an explanation as to how he thinks my ME and fibro caused me to be suspended like that for so long, and caused all that injury and pain when it was not there before, its just ridiculous!!

After getting so many lovely, kind messages of support i am going to contact pain clinic next week as you have all made up my mind for me by giving me that push to do it.

Take good care 😊😊