Be warned this is a pity post. I am despairing and need your advice please.
As you know I had the nasal surgery in February which went well but I haemorrhaged afterwards. While I was in hospital my left leg became quite rigid and quickly became painful. The pain and stiffness got so much worse quickly but I was shocked at how I have been dismissed and Buck passed between Doctors. Bear with me this is quite long and garbled because I am crying as I type it and sleep deprived.
GP number 1 said you are beyond my pay grade and refused to examine me. I was to,d to call Rheumatology.
I called my Rheumatologists secretary and was told you cannot call here call the helpline.
2 days later a Rheumy Nurse agreed to speak to the Rheumatologist and a prescription for 6 weeks steroids was sent to my pharmacy. Within two weeks I was bike to walk with my sticks , get in and out if the car with minimal help and sleeping better.
A week after the steroids finished the pain came back with a vengeance.
GP number 2 sent me to the breast clinic and would not discuss my leg. After six hours no lump was found but they expressed concern about my mobility and dexterity and suggested referral to the MSK Team.
I referred myself to the MSK Team who rang he two days later and refused the referral citing that I might have a DVT.
I paid for a private Doppler scan which was fine.
In the interim I had called the Rheumatology Helpline 5 more times. In the end the nurse apologised and said there was nothing that she could do as the Rheumatologist was not responding.
I rang my surgery’s pharmacist and had a meltdown. He increased my mst and emailed Rheumatologist, who asked for bloods to be taken. Inflammatory markers not raised so no steroids given.
GP no 3 was thorough and actually examined my leg and took photos. She referred me to Dermatology for possible Panniculitis and to the physio. She sent the photos to my Rheumatologist and requested an urgent appointment given my pain levels, lack of sleep and how badly the inability to walk more than a few steps was affecting my Independence.
I received a cancellation Rheumatology appointment. Had lots of bloods taken and admitted to the Medical Assessnent Unit. Femoral Doppler and d dimmer test showed no blood clots.I was given six weeks of steroids. In week two I could walk more comfortably actually went out for lunch, did some gardening and housework and started to smile again.
Physio appointment. No examination but assured she could see the level of pain I was in and would refer me to herself at the hospital to have a 45 minute assessment. She said if you don’t hear in two weeks call us. I did only to be told you are routine and will have to wait.
I booked a month of twice weekly Chiropractor sessions in desperation. She said my tibial head was stuck and not moving, that my ITB was rigid putting pressure on the loose kneecap but that she could feel heat coming off the keg indicating inflammation.She got the knee bending a little I had hope and then I finished the steroids. My leg stiffened and the Chiropractor said she could not in all honesty take my money when there was nothing she could do. In her opinion knee replacement is the only answer and urgently, but of course they will nit do it as I am morbidly obese and gaining even more weight with the past seven months unable to exercise at all.
GP number 4. I saw on Tuesday. She had a letter from my Rheumatologist saying no blood clots but he will follow me up in clinic and consider DMARDS. She said a knee replacement will not take away the pain as it is clearly inflammatory as it responds so well to steroids.
Phone call to Rheumatologists secretary as advised by the GP. Couldn’t help re appointment or emails to the Rheumy advised ring the helpline.
Called the helpline not open on a Wednesday. Called her back and begged for help. She refused.
Telephone call today to the Helpline. In fairness a nurse got back to me within hours. But she said I could not have steroids because I had given the GP a urine sample as requested by Urology. She said there is no way that I will be prescribed DMARDS as there are no inflammatory markers in my blood. The poor you attitude was so condescending. She said don’t worry you will be seen in November in clinic. I had a meltdown. I said none of you are trying to help. The pain is intolerable, I am not sleeping, my BP is high with the stress if being in constant pain. You have a meniscus tear she said and severe osteoarthritis . I said the tear is in the other knee and I have had severe osteoarthritis for over eight years yet I am not crying about that and that should tell you that this pain is severe. Have you tried losing weight? Before I could answer she said what do you eat? I said I was vegetarian but did have cheese for protein. She said it’s pure fat you should eat chicken ? Then she told me to sit in my chair and do weights. I said with all due respect I do nit want to sit in my chair and do weights I want to be out in my garden, I want to walk my dogs. Well you can’t she said. I asked why not give he steroids so that I can move more Sge said because if we gave you steroids and you have a UTI you could end up ill and in hospital. Good I said then someone might actual x Ray or scan my leg. She said you wouldn’t say that if you were in ICU. I told her frankly I wouldn’t give a 💩. You would she said.
aww bless you is that ok then? No I said it is not ok. Well there is nothing we can do but I will tell the Rheumatologist.
I feel that I am in a living hell.I seem to be pushed around and nothing effective done. I know there are no magic wands but I hate the tearful exhausted, miserable, bad tempered person that I am becoming.
If you have got this far thank you and if you have any advice it would be gratefully received.
Much love to you all xxx
Written by
CecilyParsley
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I am so so sorry to read what you are going through, it sounds absolutely horrendous. I honestly don't know where you can turn to next but someone has to take ownership of this. Can you maybe contact advocacy to see if they know how you can get treatment? 🌹
I had thought of that Carol but honestly I am so embarrassed. My eyes are leaking all the time. I don’t sob just tears. I go for bloods it happens, Chiropractor it happens. I feel so feeble and pathetic. I am not that person . I know no one has a magic wand but I feel so desperate and hopeless. If I could sleep it would help. Maybe I will discuss it with my husband when he gets home. It is affecting him badly, I am intolerant, irrational and emotional all the time. I am hard to live with I know. He wants me to make a formal complaint but it would have to cover so many Doctors, nurses physios it is hard to know where to start really. Thank you for reading and commenting xxx
Don't be embarrassed, you have absolutely nothing to be embarrassed about. Tears aren't a sign of weakness, they're a sign that you have had enough and that you need help and you're willing to say that. You are strong you know, you have hit so many brick walls and you're still standing and being prepared to fight for what you are entitled to!! 🌹
Thank you Carol. I don’t feel strong right now. I just feel I don’t matter because I am obese. I used to be so active until multiple falls cracked one knee cap and loosened the other. Then the osteoarthritis really hit so I could no longer walk as far or do so much without stopping repeatedly but I still did 40 minutes a day on the treadmill. I took gentle exercise classes twice a week then my knee dislocated so I had to give up driving and despite all that I lost 7 stone to have the ops but everytime I went to pre op they deemed me not well enough. The last time they said we will do it by spinal we have done it for far bigger than you so I had hope. Then I saw the anaesthetist and she said no. So ok I have had a binge on brownies at the weekend now and again but I eat salad 5 days a week normally, I make my own bread, no additives and malt grains and pumpkin seeds . I don’t eat processed food so yes I could eat better but not an awful lot better it is the sedentary lifestyle that is making me so unhealthy and all I want is a helping hand. Give me a new knee and I will do the rehab then be able to move more feel happier, go out more, eat less . Xxx
We all have binges, it's part of life but you don't continue with it. Autoimmune disease doesn't help either, it contributes to weight gain along with medication. I eat well, plenty of fiber, healthy fats, moderate carbs, high protein and I still can't lose weight. I showed my son the weekly food intake and he can't understand why I'm not losing, I'm always in a calorie deficit. Saying that, I haven't given up, maybe one day it'll work. I also used the treadmill for about 30 mins a day but I've not been able to due to ongoing issues with my lungs. Looking closely even when I was walking in the treadmill for 30 minutes daily, even that didn't contribute to any weight loss. I can see your frustration and can fully understand it but you also need to be kind to yourself. I don't know much about it but can your GP not prescribe the weight loss injection that we're hearing about? I honestly don't know if they're available here but maybe worth a discussion to help with future procedures? 🌹 Xx
I am so sorry that you have the struggle too as a veggie I eat loads of fruit and veg but since my op my gut has slowed and I have been having to use multiple laxatives.The nurse today said have you heard of salad? I was appalled.
Strangely enough my carers brother was put on the weight loss injections and the weight has dropped off him. It might be worth asking the GP thank you xxx
How bloody patronising and rude!! I eat loads of fruit, really don't like veg but try. I've been prescribed laxido and fybogel, a waste of time. Hopefully your GP will help, always worth a try 🌹 xx
My last resort before I go down the complaint route. That might take some time if I add the Uro gynae registrar who lied on my clinic notes and when I challenged her in writing she said she “ misspoke”, and the pain specialist who had me on a bed naked from the waist down with no curtain or modesty blanket, then told me I would need a referral for each part of my body in pain and as I had been referred for pelvic pain she disagreed with the diagnosis of two gynaecologists and a private pain specialist so all she could offer was a psychologist then discharged me still in agony.
Why do we put up with these people? They have such enormous influence over our lives. It is because we are worn down with pain and fighting to get treatment, care and respect . Xxx
Its very difficult personally dealing with many issues and not getting the support your looking for, one big circle going round and round. You should definitely ask your GP about the weight loss medication and see where you want to go from there 🌹 xx
oh CP I cried 😢when I read your post . I am so so sorry you are going through this it’s such a jumbled up mess and none of it is your fault . I can’t offer you anything other than a big virtual hug , and christ if I had a magic 🪄 wand I’d be waving it over you . Trouble is we become too exhausted , Ill and mentally drained with it all to unpick it don’t we …
Thank you so much lovely. I am at a loss to know what to do anymore. It is the absence of hope that is crippling me. At this rate I am going to need mental health support. Two weeks ago on 15 mg of pred I was cleaning my kitchen, bathroom and living room, I was smiling and planning to go and get my hair cut and now I am sat in a chair. If I ate nothing it would take years for me to disappear lol. I think they would like that I seem to be a burden to everyone. Hugs and prayers so very much appreciated xxx
Oh goodness, what an enormous amount you are having to deal with. Is there any way that you can ask to see the same GP to try and get some continuity of care - it seems that some are on the ball but they probably can't help you disentangle all this as so many are involved. I have found this problematic as well. I'm sure you have tried and it can be so hard in more complex cases with practices with loads of GPs. You're seem to be ending up following advice and then facing some brick wall or contraditory advice. Maybe someone at the GP's practice could help you with this?
By the way my inflammatory markers are always bang on normal but the pain has not been. Thank goodness the consultant took me seriously and ordered echocardiogram - where the inflammation was evident. I have been on DMARDS off and on with normal inflammatory markers!
The only other advice I can think of is to see a Rheumatologist privately to get them to disentangle this for you. So sorry that I can' t help more. Your distress and frustration are palpable. Thinking of you. Rosie xx
Thank you so much Rosie. I did contact the surgery practice manager and made her aware of the situation and asked her for the one Dr who has been thorough and helpful and for double appointments. In fairness she agreed immediately and listed her as my named GP. The problem is that she only works two days a week and has been on holiday for the past two weeks coinciding with the no steroids period. I am going to try and see her next week and plead for some sort of imaging and maybe’s letter to Orthopaedics to check if my tibia is further loosening my kneecap.
I would be booking the private Rheumy now if I was sure it was a Rheumy I needed but without imaging which I cannot afford privately, I suspect they will be no more informed than my own Rheumy.
Thank you for sharing that you had inflammation that did not show up in your bloods. It reminded me that in 2011 I began feeling breathless and dizzy when exerting myself. My then Rheumy said your bloods are normal but a CT scan showed enlarged inflamed lymph nodes pressing on my heart and lungs. I think sometimes we go through so much it is hard to remember it all.
I do sincerely appreciate your kindness and I know I sound as desperate as I feel sadly xxx
It's sounds very positive about the practice manager and something to focus on. Hopefully, with this GP on board you will be directed to the right person. This lack of inflammatory marker has (I suspect) led to many of us not being diagnosed without other clinical evidence. Fingers crossed you get some forward movement next week. xx
Indeed, brain has gone on long term sick. My memory is non functioning. Only good thing is that I get more steps in per day going round in circles collecting or doing all the things I have forgotten. Even finding the right words is a challenge! x
been there, in fact read your bio and can relate to all your posts and symptoms as many here . I was asked my name a couple of weeks ago and it sounds ridiculous but I couldn't think and daughter said it for me. I felt stupid. its not permanent just periods of but 🤷♀️ I was so much worse before steroids in this area and for this alone they were a godsend but slowly creeping back. Memory is one of those things joked about, but I seriously find it worrisome and the way it fluctuates , especially as this only became a problem through my late journey x
I try not to worry but recognise it as part of the fatigue. I think cognitive issues are recognised. Often, when word searching, my brain goes to the right 'filing cabinet' but consistently picks the wrong word. So frustrating. OH calls me Miss Malaprop - I would have done magnificently well in Tudor times - would have put Shakespeare to shame!! x
I do that too. I call myself Mrs Malaprop. Friends can tell when I am having a bad day because my text messages are illegible. When I re read them I think OMG. It is so frustrating.
My worst problem is when my brain knows the word but my mouth will not say it. Ordering from a menu can be a real effort so I just point now lol xxx
We can but laugh really. Woe betide anyone who laughs or tries to correct me, who knows me and my disease- I take no prisoners. Externally, I might appear less than bright but internally I know my IQ has NOT dropped by 50 points. Ah, the trials. Am about to embark on a knitting project. A simple scarf in a beautiful yarn and hope it will keep me out of mischief (I wish I had the energy). Thinking about your general health, I know you are a vegetarian but have you considered eating fish. I haven't eaten meat / fowl for over 40 years but I do eat fish- just a thought! x
Good luck with your knitting project. Please post photos when you have finished it.
I do eat tinned salmon once a week. I make myself to ensure I have that protein and goodness. I take sea buckthorn capsules daily which is the veggie equivalent of cod liver oil .
Yes we have to laugh. Mind you I cringe at some if my malapropisms because the difference between those who make them unwittingly we can actually understand how I appropriate they are. I once told a Urologist that I had had my vagina removed 🫣😳. I blushed beetroot red when he said I think you mean your womb. Fortunately he found it funny xxx
Yes Meg exactly that. I said to my Rheunatologist I am nobody’s bloody problem. He looked shocked but it is how I feel. Thank you for the hugs so very much appreciated xxx
What an apt description. I seem to have met so many of those in the past seven months. My ENT Consuktant was exceptional though as is my Bladder and Bowel Nurse. I wish I could clone those people xxx
Dear CP I am so desperately sorry you are going through all this, it is unbelievable that you have been passed from pillar to post and very little done in the way to help. Can I suggest that you write to your MP, and basically I would, copy and paste what your opening post said here. I had to do this when I moved last year, without my MP I would not have had an appointment, not had my hospital discharge notes acted upon, not had an appointment F2F to address my needs. In essence they were shamed into it in the end, and I took from there, and in no uncertain terms they have been told I will not tolerate being dismissed, ignored when I have complex medical conditions that need monitoring.
It is draining and I don't know what your MP is like, and if indeed you feel you can do this, but someone somewhere needs to get on board with you and help. I am so sorry.
Hi Karen, I am so pleased that your MP helped you. Unfortunately my MP is an ignorant and arrogant Han who has refused to respond to the frequent letters I send him. He is never around and has let the local community down badly. He doesn’t like to be reminded of it either. I always manage to fight for others and had to go to the public Services Obudsman for one elderly friend. Now they acted immediately. It is a shame there wasn’t an Ombudsman for the chronically sick isn’t it?
We don’t have PALS here in Wales but I have found Llais who are similar so if my lovely GP cannot or will not help next week I will contact them as right now I need some support.
It is so good to hear that you are now advocating for yourself too. Sometimes it is the hardest thing to fight for yourself, so much easier for others.
Thank you fir your kindness, so much appreciated xxx
So sorry Cecily and you know you have my full support.🤗 I too am overweight and not total vegetarian but eat very little meat. I used to be very slim until became unwell. I too was told to cut down on portion sizes when went to respiratory , I was so shocked my stomach was hugely bloated in fact I was (I now know) full of inflammation, systemically ill and I eat less than ever have. They told me if I lose weight and still have problems they would see me again. I haven't lost weight permanently( I lose half a stone every while ,I guess this is when I can be more active 🤷♀️) and I still get breathless periods, so weight is not the issue and if this is doctoring then 😡.I can only agree with Turquoise-1 and yes im sick of them. Pals are dismissive, everything in place is to protect the medical profession and there seems little justice. I continue with my advocate , its principal, and I need answers that are not forthcoming and answers to lack of care and neglect when I most needed it, and I just want the care I am entitled to. I did not want to go this route I just wanted fitting answers and help , the complaint is bought on by them not me ,I just want to live my life in the best way I can , it is them hindering it, and broadening it from my health to the extreme knock on in life and all around it has. I no longer have trust in healthcare(generally) and that is detrimental alone, as I just avoid gp now . I will go to ombudsman next. I would think of getting an advocate though Cecily as the medical profession cannot treat people this way.My mp also didnt want to know. There is little medical care now, it should just be called emergency care and too often thats all too late but they bought in self care as avoidance not to help. I have had to self care as no option but I do fear how bad id have continued without the steroids I had, as my self care was not bringing the results they did.
You're story is that of many sadly and I dont know why but its inequality for whatever reasons and totally damaging. You have my heart and yes there are those that have got the help and frown upon this way of talking but its OUR reality, it exists and we are strong so can air it, lord knows I am not at many times and often its got the better of me, but I speak not in malice but to reality and wanting the same health care as anyone who does get it. You say it all, with the care and treatment you feel better, why would treatment help if nothing wrong.
I too was told by ophthalmologist id see her in 3 weeks, for test and pictures, she is nowhere to be found, I had to chase to be seen and not by her no pictures and positive test yet now put on routine wait. Also neuro ophthalmologists are rare and my daughter still didnt see one and the one she did see and whom I fear I may see as neuro ophthalmologist on long leave, was a mr not a dr. I looked him up and he is a medicolegal, obviously with ophthalmology experience, but how does this match a specialised neuro ophthalmologist. im fearful for us both, so far re daughter they just constantly look at eyes and yet it has been a neuro ophthalmologist she was referred to , and just keeps being told will be sent another appointment 🤷♀️. Nothing is being addressed, nothing matches 'what to expect at appointment' and health problems continue. Last appointment he said to go to an and e if she has another attack. How does that help the interim, its the way things have gone it seems 😢
You are entitled to healthcare Cecily, and to be treated fairly and decently and as this is not happening, it needs addressing, your are not becoming tearful and bad tempered and miserable because of your health you are strong, as I, it is because of the lack of care, treatment etc , at my trust the care is not there and fear the nhs suffering as a whole but that is no excuse for this ,it should not be that some get care some dont and an advocate may help you with your fight and fight you must .
My ent doc was good too, he cared but not aligned with all else, I feel he was let down by colleagues the same as I was. He was the only one who would see me as a front man if you like, yet with different problems I should have been seeing different specialities, it doesn't make sense.🤷♀️
I send 🤗🤗🤗🤗 in abundance , you have much support here but maybe advocate support will help you with support re this situation 🙏. Stay strong and well as can be xx🤗
Oh my heart breaks for you and your daughter. I honestly do not comprehend the diabolical treatment you have received. It is never ever acceptable to be treated this way. We all know that there are no magic wands, no miracle cures but we have a right to expect medical professionals to try to help.
Personally I acknowledge every single time a medical professional is trying to do so. I bought a bouquet for my ENT Consultant who actually cried because she was used to receiving complaints and abuse. I bought boxes of biscuits for the Junior Do tors and Nurses because they were so kind. Bittkes if wine for good GP`s. Bottles if whiskey for my gynaecologist and the Registrar when they unstuck my pelvis. Bladder, bowel and womb and drilled holes in my ovaries to give me a chance of fertility. I am grateful for all of them and like to show it. I had a GP when my Mam was dying who would knock the door at 7am, make his own coffee because mine was vile apparently just to see that I was ok. He was a remarkable, caring and capable man. I will never forget him. It is a shame that these others who condescend, dismiss and even worse ignore our suffering couldn’t be awarded the opposite 💩 awards where they were judged by their patients on their performance. Now that would be interesting eh?
I send you and your daughter huge Cwtches and sincerely hope for an expedited appointment with neuro Opthalmologist. It is shameful that now you have had a positive diagnosis you still have to chase and not get what was promised. Xxx
you are kindness itself and look how rewarding kindness is.
Yes it would be interesting 💩and seriousness aside this made me chuckle with my vision of this!
a world where all medical proffessionals are moral in their work and compassionate rather than being few and far between and having to be lucky to find one.As you say they are there just not in abundance
I hope you find the help with this and fight on , battling on is what we do best !
I hope next week your gp can help and best wishes and thoughts are with you always 🙏🤗 xx
If you up to it though these scenarios need calling out and id look for an advocate, I may not get the answers (truth) I want but they may see its not acceptable to treat people this way and hopefully they will see that,
I truly hope you get answers, you need them, not just for you but for your daughter going forward . You both require not just answers but appropriate treatment. An apology too in my opinion as do I but apologies without action is worthless.
I’ve given up going to see any of ‘them’ - so sick of their lies, closed ranks, misdiagnoses, shoddy care/treatment, apathy etc, etc, etc , etc
’They’ make me ill so I avoid any interaction, use GP just for my repeat meds, contact them as a last resort (& rarely) - I’m far happier when I aren’t involved with anyone from the so called, “Medical Profession.”
Lost my faith in any of them, don’t trust them anymore so will not allow them to humiliate me further with the way they twist everything.
I look after myself, battle on despite many ailments & only seek medical intervention if it’s absolutely necessary.
Be warned, any of the in house hospital patient advocacy services, eg PALS etc aren’t to be trusted either, especially if you’re raising a complaint. They’re helpful for assisting in acquiring information, letters, medical records etc, but complaints are another matter entirely.
The service exists to protect the hospital trusts, GPs & other healthcare providers so the patient doesn’t take the matter elsewhere, eg ICB, Ombudsman, CQC, governing bodies & or Medical Negligence Solicitors…….I speak from experience.
If you’re frustrated & upset now, you’ll probably be even more so after any dealings with PALS (or Welsh equivalent).
Keep as well as you can xx
(Ps, I follow Weight Watchers (have done for 25 consecutive years), been at my Goal Weight for 9+ years. They have a very comprehensive App, Virtual Workshops, fabulous support groups, Coaches & online Community. Various offers & membership deals too, it’s good value for money.
Every aspect of physical & mental health is covered with specific groups, podcasts, exercise classes for all abilities including meditation, mindset & general wellbeing. It’s way more than just food …..).
I can totally understand your position, I have on so many occasions been left feeling humiliated, distressed, angry upon contact with these so called Consultants . That said I have had incredible experiences of people who go above and beyond to help me which have had even eternally grateful. My ENT Consultant was exceptional, the anaesthetist and Junior Doctors and Nurses who worked with her were all warm and caring and hade a huge difference to my life. My Urology Nurse could not be more informative and helpful. I have had truly compassionate Orthopaedic Consultants, Haematologists, Gastroenterologists.
These people do not mitigate for the lack of decency and compassion in others but they do help me realise that there are decent, hard working Nedical professionals out there.
I cannot just leave this issue without seeking advice. I cannot tolerate the pain despite the morphine and my mobility is getting worse by the day. My weight is a separate issue but I need to keep pushing for answers or I will be permanently wheelchair bound and needing psychiatric help as well as having to sell my home as using stairs is excruciatingly painful.
I applaud you for being able to manage yourself without medical intervention and truly do comprehend your reasons for doing so. Long may it continue and thank you for responding xx
Being a former medical professional myself, who does indeed require medical intervention at times due to certain health conditions suffer from, I agree that there are some outstanding care providers.
Having had spinal & orthopaedic issues since the age of 14, including Scoliosis, I’ve had more than my fair share of orthopaedic visits/treatments + several surgeries & I’m riddled with osteoarthritis (neck - previous C-Spine fracture),, spine, shoulders & knees . Many sporting injuries & wear/ear from competitive sports & dancing….always been into exercise, health & fitness but it’s not prevented me being crippled with excruciating pain.
Yoga for 40 years has kept me mobile by being strong & flexible alongside daily physio.
Pain is part of my every day life, but as long as I’m breathing, there’s more right with me than is wrong.
The Community Chronic Pain Service/Muscular Skeletal Team & Physiotherapists have been/are an excellent source of support for me as is the Anaesthetic Pain Clinic.
WW support GLP1 drug for weight loss which many GPs are now prescribing.
I am so pleased that you have had many positive experiences with our NHS too. You certainly have had more than your fair share of pain. I think we all have to expect to manage a level of pain but when it impedes your independence, stops you sleeping, walking, standing, it is not acceptable.
Having slept for a whole 4 hours last night I am ready to fight on today. My pain levels are saying there is something badly wrong with my leg above the issues of weight and severe osteoarthritis, my leg is swollen and my kneecap has sunk down on one side. Time for someone to step up and diagnose it. Xx
So sorry you are having to go through this , it’s definitely not right, I have osteoarthritis as well as autoimmune and it’s awful when they try to blame one when you know it’s not. You shouldn’t have to be going through this pain especially when steroids help. I’m on steroids and never had a UTI . Maybe a good Gp would help? Hope you get sorted soon.
Personslly, sometimes I feel it might be necessary for me to get on the train and go to London if ever I need to go to A&E. This would take a few hours. I don't trust the local NHS here.
Part of it is this limitation of only considering ESR and not considering doing an Ultrasound when inflammation expected.
It is pretty clear that this assumption is wrong. So many of us here prove this. Mine was 8 the week I had a bad flare, normally it is 2, sometimes 4.
There is an equation (have to scroll to titles lower on this page):
As a female, in my 60s figures many magnitudes higher are required. At least younger women and men get a look in, and even for them the required figure can be far to high.
Hope you find someone who will help very soon.
Thanks for sharing and keep us updated.
We need the system to change. It is not working at the moment for lots of us. Part of it is the individuals involved not making a stand, not just pressures in the NHS.
I thought so too in 2011 and actually then my GP was allowed to refer me out if Wales and I went to the Lupus Unit in St Thomas`s. I will always remember the Rheumatologist’s words..unless someone else has been giving your blood you have SLE. My local Rheumatologist took exception to them “ undermining him” and wrote a letter of complaint. When I returned three months later to London for my check up the sane Rheumatologist said sorry you don’t have Lupus but UCTD. My local Rheumy then said don’t worry I knew they would discharge you and I will take you back.I told him where to go and discharged myself from his care. I firmly believe that the sudden change in diagnosis was as a direct result of his intervention.
Now we are not allowed referral to outside Wales referral unless the service cannot be provided in house. They consider our Rheumatologists to be competent to provide the care so I am stuck.
Ot really isn’t good enough. At least my GP understands how badly I have been let down by the pain clinic and Rheumatology so I sincerely hope she will support my desire to have x rats and a CT scan.
Exactly. I was furious. I refused to see anyone but a GP u til I got sick and had to accept that the GP although she was wonderful could only help so much. It was the continuation of the fence sitting Rheumy … well you probably have lupus, you probably gave Bechets and you probably have Fibromyalgia. At least he was pleasant, courteous but never once examined me. Every six months was like a time warp
I did get that far and OMFG (use the F how you like!). Some days I feel as if we're living in a parallel universe and not on the good side. I have nothing apart from some empathy for how low you must be. When I reach desperation stage which I did when my Dad was so ill, I actually said to the Oncologist, "Is this what you'd want for your Dad?" "If it is, then you're right, I am making a fuss!" Things moved pretty darn quickly after that tbf. So you could try and say to those people that are immovable - "If this were you, how would you be feeling?" Other than that, I was given some great advice this morning, to try PALS, which I'm looking into, but I'm exhausted from all this so goodness knows how you must be feeling. I don't know what I think about the NHS any more. Some days I'm really grateful, but I think that's part of the problem confusing gratitude with respect. The latter one going both ways. Your conversation need not have taken the route it did if you were actually being listened to. I have no other words to help you out of this mess. 🙏❤️
You made me giggle, a rarity these days because I am a real potty mouth. I was restrained yesterday given my pain levels and no sleep that I only said 💩. If I had spoken to the patronising nurse much longer it would have got worse.
I totally agree with you about standing up to Consultants. I remember when my Mam was ill I had sat there on Doctors rounds hearing people told the most awful news with everyone else listening in. My Mam was visibly shaking when he cane to her. I asjed very politely if there was a room we could use to be more private? He said what do you think this is BUPA? All his entourage giggled. I said no I think this is our NHS where patients can expect decency, respect and care so I ask again is there a room available please? He stormed out with all the junior doctors giving me the evil eye. My Nam said please don’t make a fuss. Next thing he returned ignored me and said to my Mam if you would like to cone this way please. We went to a little room which I was pleased about as visitors had flocked into the ward. However the way he spoke to my Mam so dismissive that she would probably die in six months or so. I let him have it. It was not so much what he said but how he said it.
Later I was sat with my Mam and he came in. I was immediately defensive but he said I have come to apologise. We do not get trained to deliver bad news and it is so difficult. When I pondered on what you said you are absolutely right it was not delivered with compassion. He then said what do you do for a living.I told him I was in University doing my Social `work degree. He told me it would do us good if you cane to work at the hospital when you qualify. We became good friends long after my Mam passed. Xxx
Glad I made someone larf. My late Dad who started off life as a brickie when he was 14, ended up running the computers at the Stock Exchange used to say when employment agencies sent him staff. Please by all means send me graduates, but they must have degrees in life, common sense and good manners. I learned such a lot from that, plus the fact when you can't have manners for someone in the last weeks of their lives, then what have you got. Defo not my respect. Good for you being there for your Mam and how qualified are you! Amazing story. Love stuff like this. 🙏😊
Your Dad was a very wise man. When I had Social Work students later in my career I used to despair at their knack of real life experience nit to mention common sense. Most I could work with and to be honest the reality if working with difficult and distressed parents normally knocked off the raw edges and the I am doing this to you as opposed to with you for your children attitude. I loved my job so much. I managed an Alternative to Secure Unit and several Children’s Homes and managed front line teams. It was stressful but a real privilege. I miss it a lot. I never got to wear my funny hat as my Mam was dying and she was the most important thing so I never finished my degree but at least qualified and she knew that before she passed. Xxx
There is a online American video where the consultant suggests we say to specialists who dismiss us, would you like this to happen to someone in your family. I will try and find the link, it was totally brilliant...
I’m so sorry to hear what you’re going through. I understand the frustration and the pain you’re in. I have inflammatory and osteoarthritis. I’m so ‘young’ so no one takes me seriously either. Have you tried swimming? Honestly I struggle to do anything on land, weight baring is agony but I’m like a different person in the water I can move. Even if you go and don’t swim, just do some of your physio exercises in the pool it will be so much easier than on land. It’s the only way I can control my weight as I can’t exercise in any other way. I hope you get some relief soon
Thank you Tonkie. I have a real fear of the water and despite so many lessons I know what I should do but freak and sink. I hold my breath washing my face in the shower. It all stemmed from nearly drowning as a child. I love to paddle and when on holiday I will go up to the waist in the sea or hold onto the side and float. I know I wouldn’t be able to get down the steps and our only pool hasn’t got a hoist.
I cannot even raise this keg or bend it lying down but you are right it us unbearable when weight bearing.
It is wonderful that you have found a way of moving without pain, I am just so sorry that you have such pain at a young age xxx
Aww I’m sorry that’s a real shame as it has been such an escape for me. But totally understand having a fear - I can’t handle heights and get bad vertigo. It wouldn’t be a pleasant escape for you at all. I really hope someone listens to you soon. Is paying private out of the option?
Thank you. I went to a private gynae last year who then referred me to a private pain specialist who caused Seritonin Syndrome, told he if I had my knees replaced I would die on the table and after six visits costing over £1,000 still felt I was in too much pain to do the internal pain blockers that I went to her for. After that we simply can no longer afford to continue.
I could have a private opinion but I remain unsure which discipline could help because I still do not know what is causing the pain. Is it just guess work and I cannot pt us in debt trying to find what a simple CT might confirm. I have looked at private CT but then you are talking over £700 and that is for the scan not the interpretation. Shocking really. I just have to hope my GP will agree to send me. Xxx
I’m sorry it all seems to be against you - and I know that place well. Thankfully I’m not in that place now, but I can sympathise. It’s horrible when no one listens or takes you seriously. Ok another avenue you could possibly go down and I’m mentioning it because I looked into it myself.. the weight loss injections. They’re available on the NHS now but even paying for them is worthwhile from what I’ve heard. The results are amazing and it may help the pain if there is less weight on the painful bits. I really suffer even putting on half a stone, I feel it in my joints. Sadly I didn’t meet the criteria to take them. But that could help with weight loss and then maybe you could get the ops you need? I’ve found that my doctors take me a lot more seriously now when they see I’ve been proactive - I’m swimming, doing yoga, physio, taking supplements etc and they’re much more willing to help me than they were when I wasn’t doing all this. I know you’re a bit stuck with mobility at the moment but make sure you show them you’ve been trying to help yourself as much as possible. I was in a dire place last year and one day I decided to live my best life - even if that is very limited now (I know it sounds so corny but it gets to a point enough is enough this has controlled my life enough) So I tried to sort any health issues I could out (no matter how small) so I was dealing with less. It’s easy to bury your head and hide away when you’re so overwhelmed with pain and problems. I then started including a lot of self care and love into my life. I now have a skin care routine - my skin looks healthier. A hair care routine - my hair looks thicker. Just little changes that made me feel better about myself. I also made sure I wasn’t living, breathing, thinking pain 24/7 - I know this is so hard when it’s so overwhelming and controlling your life so much. But your brain actually rewires and fibromyalgia can start when you’ve lived with chronic pain so long. I can no longer do the hobbies I loved, or the exercises so I adapted. Instead of reading books I listen to audiobooks. Instead of playing piano I listen to my favourite composers. I know it sounds so small and insignificant. But it really does help taking your mind off it for a bit. Try and find an escape for your sanity while you battle through this. Keep fighting the doctors (I’ve been waiting 2 years for someone to take me seriously about my hip) and in the meantime, try and make life as enjoyable as it can be for you right now. Maybe ask your partner to massage you - it may even help the sore bit? But if not somewhere else just as a treat. The more feel good endorphins the better. I know it doesn’t fix any of it or make it go away but it makes life a little less miserable in the meantime - your mental health is important too.
By the way - has anyone mentioned CRPS to you? They tried to diagnose me with that for the longest time.. it could possibly be that if they can’t find a medical reason? It’s a very painful condition and it can just affect one leg. It’s rare too. Try and get a referral to the pain clinic and see a pain specialist to get it ruled out if anything.
I have never had CRPS mentioned but it was something I looked into. My issue that this is new only since February. I am waiting to see the Dermatologist as the GP found brown lumps on the back of the leg. It has lasted 7 months. Whilst I am in pain due to my kick of Cartledge. Bone on bone knees with one kneecap having a hairline crack and torn meniscus and the other with a loose kneecap and propensity to dislocate, plus my Bechets pain and pelvic pain, this new pain is truly debilitating. I lost 7 stone with all the other issues by treadmill walking , walking the dogs etc but now only a few steps has me sweating profusely, limping and having to stop. Getting in and out if the car my leg has to be physically bent making me scream, getting up and down stairs is agony. This is not sustainable.
I did prior to this bake, garden, go to pottery, read, quiz, support friends with issues such as housing, I am interested in politics and write meters, sign petitions etc. I have had acupuncture, gone to Chiropractors, had Bowen’s Therapy tried Mindfulness, counselling and EPP programmes. Honestly I do not sit and moan. I try my best to help myself just as you do. I think this pain is just too bad to accept but thank you so much for all your advice xxx
I’m so glad you have other things to occupy your mind. When I was at my worst I was completely overwhelmed and couldn’t see a light at the end of the tunnel at all.
Have you tried sitting in A and E? I know it’s such a horrible place to be especially when you’re in pain. But explain to them you’ve tried everywhere no one is helping you and you can’t live like this anymore. You should get referred to the appropriate specialist from there? Just an idea. I’m so sorry you’ve lost so much quality of life through this.
I have considered A&E but my Kat’s time there I was 12 1/2 hours and I was struggling. It is a last resort for me I think. I am struggling to sit comfortably anywhere so having to sit for so long is agony
I will try the GP she only works two days a week so I hope I can get in next week and ask for a CT xxx
Hi CP, what a mess being passed from pillar to post. I really feel for you.
I complained to PALS about a delay in getting ready for my op, when the porters came to collect me, the ward sister told them I was out having a cigarette, when I was actually being rushed to have a shower!
The surgeon was not happy being kept waiting, understandably, but until I was told by another nurse the reason, I assumed I had done something wrong that I didn't know about, (which was true!)
PALS was very condescending and patronising, expressions like "we are sorry that you experienced a misunderstanding" etc. No help at all.
Unfortunately, and I am extremely cross about this, the episode of my phantom smoking has followed me through many years. Each discharge sheet comments I am a smoker. I have never smoked in my life. I finally managed to get it altered to "ex smoker" which is better than nothing I suppose.
The point I am making is once you are labelled as "difficult" has "mental attitudes" or "expects to be treated differently as a priority" it is very difficult to get past that.
You may be aware that you can be treated at another hospital. I had thyroid issues and the hospital didn't want to know. I asked my gp for a referral to a different hospital where I am treated as a patient who has problems which can be dealt with. It is so much better to start afresh.
You may have luck with PALS but don't rely on it. It is usually bland, will not accept poor care and they promise it will not happen again due to further training. Pffftt is all I can say!
Good luck with your GP and hopefully you finally get the treatment you deserve very soon.
Thank you so much for sharing that. I have never used any form of advocacy before just either complained directly which resulted in a change of consultant on two occasions or via the GP who was livid on two occasions and complained on my behalf before I had a chance to. Again the outcome was a change of Consultant.
In my area we have six hospitals all used by the Consultants. The problem I have is that if I get my previously lovely helpful Rheunatologist changed my options will be three previously complained about Rheumatologist and one I have requested twice and been told her list is full. I simply do not understand why my current Rheumatologist has suddenly become disinterested. For three years he has referred me quickly to other departments when required, read my notes, liaised with other Consultants over my treatment and always said any problems at all just call me. But when I tried…..Even the nurses tell me he is a dream to work with, that his clinics always run over time because like other Rheumatologists they work with, he genuinely cares.
I accept that they are overworked, under resourced and pressurised but surely by now he knows he well enough to know that I am so grateful of any help, never complain, have never rung him previously and the fact that I had nasal surgery under local anaesthetic shows I am not a baby. His failure to help me has hurt me emotionally nearly as much as physically.
I picked up the leaflet for Llais because I am very anxious that the anger and frustration inside me will blow and I will be deemed abusive. How I controlled it with that nurse yesterday I will never know. Patronising,condescending, insulting..have you heard of salads? I mean she doesn’t know me and I was wanting help with pain so severe I am crying even on morphine. She chose to harass me about my weight in a shaming, derogatory manner when I was trying to cope on an hour of sleep. No doubt she will have recorded that I don’t give a 💩if I end up in ICU because at least someone will look at my bloody leg. It is not who I am. I am not difficult, in fact I am normally receptive and always respectful.
My surgery has one GP on for the past two days so I am not going to call until next week to see my preferred GP. I hope Sge will send me for an x Ray and CT to try and diagnose exactly what is going on. Xx
Possibly good rheumatologist has got into trouble.You know what goes on.
Everyone is supposed to tow the line, use standards the 'experts' come up with..if standards are lacking where does that leave the conscientious specialist.
PALS once forwarded my feedback to the hospital trust Compliants team. PALS probably had a review process and decided they would not touch it. The compliants team put me in touch with a clinical team leader and had worthwhile discussion.
Unfortunately this was followed by ludicrous letter from the hospital's most senior nurse who seemed to have completely lost the point. It was shambolic, took lots of energy and my points, that I researched so hard, were completely lost on her. Makes you wonder what attributes they look for in their most senior staff. Maybe she was exhausted and just churning out lots of letters so had not any energy left to check they made sense, but nobody is overseeing what is happening and the poor standards.
(My GP had actually advised me it would be pointless giving feedback.
I understood, at the end of it all, where he was coming from.)
Nothing more helpful to add than what's been said, but I wanted to send a big hug. This is all so appalling, and the fact that so many of us have similar issues makes it a million times worse. The one thing I would do when you see your decent GP is ask for the new obesity drug: if they need you to lose weight before they'll deign to treat you - well, that's exactly what semaglutide was invented for. And I think you *should* complain to PALS Wales (If you feel the matter has not been resolved, please contact PALS on 03000 851234 or you can email us at BCU.PALS@wales.nhs.uk) and copy it to your GP and to your MP (even though he's been ignoring you, he might step up when other people arwe involved). Wishing you much relief in the very near future!
Thank you so much for all your kindness and suggestions. I am very grateful. Although I do not wish my treatment , or lack of it, on anyone else, the very fact that I am nit alone truly does help. When you are at the sharp end of such a lack of compassion, it is easy to internalise it and think you have somehow been singled out. Xxx
we don’t have Pals as such but the Welsh equivalent . I have the leaflet and will see how it goes next week with my GP next week to see if I can get a CT or even an x Ray. If not I will definitely proceed with a complaint. Thank you xx
Unfortunately I seem to have worn myself out caring for her and prompted a RA flare up by doing too much but it’s all temporary hopefully. Any progress your end CP?
Oh bless your heart. I worried that might happen. Can you get some help now lovely? You need to look after yourself for a while now. I hope your flare eases and does not last too long .
No news from me I will call today but I suspect there will be little chance of seeing my GP they were down to one doctor three days last week, I couldn’t even get a prescription signed but I will try, thanks for asking. Rest up now xxx
I am shocked, I just opened my nail to find two prescriptions, one for DMARDS the other for a six week course of steroids, together with 16 stickers for bloods. No explanation just a compliment slip with please find enclosed prescriptions and arrange for bloods at your surgery?? So last Thursday Nurse Ratchett tells me I cannot have either and that steroids could put me in ICU and today I can take both ???
I am positively gleeful that the steroids will ease my pain in a week or so and I will be able to go out in the garden, out for coffee and get some sleep. I have never taken DMARDS so not sure what to expect but at least he is trying to help me now and that is all I wanted for someone to try xxx
Thank you so much. I have so many questions ie do I stop the Colchiccine? Do I wait to have the bloods done? Should I wait until my results from the lab get back e my potential UTI? I feel a bit discombobulated to just be given them without clear guidelines and my GP is off for two more weeks. But OMG the gratitude for the steroids is massive . I admit to having a little cry in the shower knowing that this awful pain will ease and I can stop dragging my leg xxx
Hi Kay,my GP has been off two weeks already and is off for another two. I had to fight to get a named GP and she is only there two days a week. She is direct, thorough and knowledgeable and has a sense of humour too so I really hope she will return.
My Rheumy is now on holiday for two weeks. The blood stickers included I presumed were for use before the medication but it says to have them repeated after a week so now I am uncertain?
The DMRD is Azathioprine.I am a bit nervous as I tend to react badly to drugs, hilarious as I am on so many really. It took months to get used to the Colchiccine, I literally spent hours a day in the loo ( I know TMI 🫣) xxx
Oh CecilyParsley, I am so sorry to hear about the runaround you have had, and while you’re in so much pain too! I can relate to the agony you describe, I’ve had pain so bad I couldn’t stand for more than 5 seconds at a time. It makes me so mad when they jump to the weight first: ‘Have you tried losing weight?’ ‘No, I can’t walk! Have you tried being less prejudiced??’ Also makes me mad that they’re not prepared to try any meds, even the effective ones, in case you develop other problems. When you’re in that much pain, almost anything else sounds like an improvement!
I have had many flare-ups where my bloodwork has come back normal. You can definitely have inflammation in your body without it showing up in bloods. High ESR and CRP are confirmation of inflammation, but the absence of those markers doesn’t disconfirm it—if that makes sense! Unfortunately, many doctors are strictly by-the-bloods and don’t think outside of that. I’ve had my share of those doctors.
I wonder if they can prescribe some strong opiates to knock you out at night? Just so you can get some sleep? Sleep deprivation can heighten our experience of pain, as I’m sure you know, so it’s vitally important they try something to help with the sleep.
I don’t know what else to suggest, except to reassure you that it’s OK to cry—from pain as well as frustration! It must be quite scary, not knowing if it’s ever going to get better. I hope you can do some nice things for yourself, things that don’t involve using your knee! 🌻🌈
Thank you so much. It has been so difficult and emotional since February. After my op, the haemorrhage, then the leg stiffness, then an eight week Bechets flare of oral basal and genital sores, as my leg got more stiff and more painful. It does annoy me about the steroids and their refusal to give them to me. If I had a chest infection or pleurisy they would immediately put he on 30 mg with no questions asked. I was on 30 mg in November last year for a month reducing 5 mg weekly. Yet when 15 mg helps my pain by 80% they will nit consider it. They did up my night time morphine to 10 mg but it is not touching this pain.
The worst part is that since 8 years ago they told me I needed a double total knee replacement, then turned me down 6 times for the op due to not being well enough 4 tines and for being too obese twice, I lost 7 stone 2 lbs by forcing myself to walk. My independence is so important but it is slipping away. I am needing help with everything. It is demoralising and makes me fearful of my future.
My gorgeous boys bring me joy every single day. I have the best dog walker and he takes amazing photos so I feel in a small way that I am with them. I really hope that I will be able to walk with them in the future 🙏🏻
I so appreciate your kindness. Have a very relaxed Bank Holiday xxx
I’m so sorry the morphine isn’t touching your pain. I understand that demoralising feeling. It’s like you’ve tried everything and they still won’t help you! I love the rays of light in your life though: the furbabies. Don’t know where I’d be without mine!
Thank you so much. I just started a new course of steroids today and so I hope my pain will be easier within a week or so again. I just need to sort out the issues with the DMARDS now. I am so loathe to call the helpline in case I get that truly awful nurse again.
I am so sorry to read all of this Cecily and that you are having yo go through it. 😔 it's horrible when nurses/specialists don't listen let alone be condescending along with it! It's not fair for them to leave you struggling in this pain and I can completely relate with you it's no fun sitting in the chair trying to do some weights I like you would much rather be out in the garden or on walks with dogs and kids etc. I am sorry I don't have any advice as its not something I've experienced but I really do hope you get some help ASAP and that things get bearable for you ❤️ sending you hugs xxx
Thank you so much Haylz. I cannot quite believe my eyes I opened my post this morning and out fell a prescription for DMARDS and steroids with stickers for a load of blood tests. No explanation just please find the enclosed prescriptions and please arrange the blood tests. So much for that nurse telling me I cannot have them. For the first time since February I have hope xxx
You're welcome lovely. Oh well that just sounds like a shambles bless you, least you have some medication now so hopefully that will be a big help now 🤞🏻 xxx
Aaaaahh 🫂🦋🪷😘😇🎉🥳🥰 so so relieved and happy for you CP.I hope you soon feel better in yourself and look forward to see your Fabulous pottery creations 🎀 so so talented ❣️
Bless you thank you. I am so not talented. I feel frustrated when I see what my class mates produce, one lady makes the most delicate , beautiful things. She made a fox which was incredible so I tried just week. Well it had a dogs head, rabbit ears and it’s body collapsed as I had hollowed out the clay too soon. Dinosaur fox 🫣🤣🦊. Definitely one for the FI bucket as we call our mistakes.
I do have a sort of rock with Skye on waiting to be fired and painted. Not sure how it will turn out mind but if I can bear it I will post a photo. Not up to pottery today and I have Urology next week though. Xxx
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And so my saga continues.......
My next step in my journey after A&E visit - few questions for people who’s been diagnosed if poss?
Help with dx
