I don't think I could get any lower. I tried to write yesterday to seek help and do something positive, but couldn't get my thoughts into words.
I've jumped through all the hoops I've been asked to and have been again, at least 6 times now referred back to the Pain Clinic.
For the last 6 yrs when I've requested to see a Rheumatologist I've been referred the OT of Rheumatology. I didn't realise these appointments were with the OT Rheumy department. Therefore I went private to seek help from Dr Hakim.
I've seen Dr Hakim who has given me a Clinic Letter with suggestions of what might help me. A Rhuematologist, who apparently saw me before but I honestly don't recall him, has declined an appointment for me after my GP forwarded the Clinic Letter. His reasons are not clear and I don't know how to find out WHY. He's stated that he and his team don't think I need investigating as my bloods were fine 6 yrs ago. 6 YRS AGO? Really? He and his team feel if I want/need MRI or SCANS that I should go private. He does agree with Dr Hakim that I would benefit from Physio.
I wrote to Dr Hakim to ask for his input and he said I should go to Physio and if I had two different departments suggesting I need help then I should have a better chance of being seen.
I spoke with my GP and she was also baffled by Rheumatologist's reply. She did agree with Dr Hakim and referred me to Physio. (I'm shaking while writing) I phoned physio yesterday to make my appointment and thet have declined to see me and have referred me to the Pain Clinic!?????
I am at square one! Absolutely shattered and we all know what trauma does to the body.
I have no idea of what to do.... I am at the point of just giving up, I don't want to be here anymore. No one believes I'm not well
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Ladyuponthelake
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Has the physio dept given an explanation for refusing the referral? Have you contacted the hospital's PALS team yet to see whether they can help resolve this issue? You can find them at nhs.uk/Service-Search/Patie...
Will you go ahead with the pain clinic referral? Cause they can & will refer you to rheumatology: my hero long-time pain clinic consultant did, resulting in my infant onset lupus & antibody deficiency illness (aka hypogammaglobulinaemia & aka PID) being recognised...at least a pain clinic referral to rheumatology would = 1 of the 2 referrals hakim is urging you to get...
Am GREATLY feeling for you dear ladyuponthelake...take care XOXOXO
Thank you, I've put a call into the Pain Clinic. I'm in a group with them now anyways so quite familiar. But I didn't know they could refer as well. Very Helpful Thank You!
Paul, what exactly do I say when I speak or write to PALS? When I spoke to one consultant with a slightly negative comment about the Rheumatologist, no names mentioned, I was told I had nonsense thoughts and that would never happen. So since then, I'm very careful how I say anything.
Please do contact your PAL at the hospital, they are very kind and helpful plus get the problem sorted for you. You can either speak to them in the phone or see them in person. Which ever way you choose just start from the beginning, take your time and give as much information as you can. Good luck xxx
Apologies for the delay in responding to your question. Have you contacted them now? As Jacqui296 has said, they are usually very kind and helpful and will hopefully ask questions to get the information they need to help resolve your problem.
Could it be that the pain clinic has a multi-disciplinary team and that they do the initial evaluation before referring you to the physical therapist? You are in a lot of pain, so it makes sense that a doctor who specializes in pain management does the assessment. They are the best with pain medications too. I know you are frustrated, but there may be a good reason to go to the pain clinic where there are different disciples helping you. Hope it works out for you.
I'm with the Pain Clinic now in a group. I put a call in to speak with them. Trying to follow the script that I've been given. It's just that this is where I started more then 10 yrs ago and now back to ground zero. But thank you for your help so so much.
Dear Lady...I totally get your feeling of despair. When I left my island home of 30 years I saw a rheum who told me various things that made me realise I’d hit a brick wall running with him. I then went on a wild goose case of this man’s making - which cost me dearly in terms of energy and money I didn’t have.
The private endocrinologist I saw couldn’t actually do much for me besides upsetting my GP practice with letters on very beautiful paper, letter headings in embossed type with his CBE at the top - saying they must prescribe me T3 to add to my T4 to better control my Hashimoto’s. This really upset my very nice young GP but I guess it helped me to get referred to an nhs endo at least. It was a very hard few years in the diagnostic wilderness I admit.
But this charming older statesman of endocrinology did at least point out that I must never trust a doctor who approached medicine in a pedantic way. He said that rheumatology and neurology are very inexact sciences and anyone who’s practice was determined by blood results, or who stuck rigidly to diagnostic criteria alone was to be politely walked away from asap.
I know how fortunate I am to have a diagnosis of Sjögren’s and Hashimoto’s and bloods that always confirm my autoimmunity. But I’m fairly certain I also have EDS and perhaps MCAS, however I’m of the opinion, supported by posts such as this one of yours and others, that travelling from Scotland to London and paying for confirmation of these related conditions will get me absolutely nowhere, and probably even count against me in terms of my present NHS team.
And, with Sjögren’s being broadly untreatable, I’m quite likely not to be offered any further treatments now and then will finally be discharged back to the care of GPs I’m guessing. So the cause of your feelings of despair might well become mine again too.
All I can suggest is that your GP orders repeats of the autoantibodies tests last done 6 years ago. I’m fairly sure they can do this but if not perhaps you could get advice from them about the most reputable company that would run these tests for you privately and then take them back to your GP for interpretation and further action?
Sorry not to be that helpful with suggestions but I am also sending you a great big cyber 🤗 - for what it’s worth. Xxx
PS and I agree with Paul and Coco. PALS and going ahead with pain clinic are very good suggestions that will hopefully help you make progress at last.
Thank you TT, I do feel that I've upset the apple cart by going private. But as I said I was under the impression that the man I now know as the OT was the Rheumatologist I kept asking to be referred to.
But I'm passed that now and facing calling PALS and waiting for the Pain Clinic to return to me.
I’m sooo very sorry about the run around you have been through. I have been in your position several times.
First of all you need to work on settling down to prevent more damage to your already complex problems. Do whatever it takes to soothe you and put your mind in a state of relaxation. Take a Epsom salt infused with lavender bath soak. Or calming music. Place lavender essential oil infusers throughout your house. Watch feel good movies. Do things for your ability to distract your mind from all of this chaos you’re going through.
Every time those negative thoughts come to mind divert them to a pleasant memory.
Once you have calmed down you will be able to reenergize your mind and plan out your next steps to overcome the system of hoop jumping you’ve already been through and get to the right doctor department and treatments needed. Don’t give those medical professionals the satisfaction of pinning you down and destroying your will to fight and survive.
You have to find your inner core strength and make your battle cry that no matter what your enemy puts you through or how many times you fall down in your fight that you’ll pick yourself up and continue to fight for your life.
If you don’t fight for yourself no one else will/can do it for you.
I pray that you will be able to do this dear.
Sorry the bold type is stuck.
Please take care dear. Sending you Squidgy hugs 🤗 much love 💗 and prayers 🙏
Am so sorry you are going through this when your clearly unwell. Have you thought about changing Drs surgery as I feel they are not being helpful. You can then put in a request to access your medical records under the freedom of information act. Have a look on the internet how to do this. Also put in a request to every hospital you have ever attended too. You keep a daily record of all your symptoms how it effects you and all medications you are taking. If asked why you want the records you simply reply it’s just for my own records to file away should I need them for any consultations for future appointments as I can’t always remember what I have done. You get someone to attend all your appointments so they can give you some support. I too went through all this nonsense not being believed and was at rock bottom. Don’t state your unhappy with your care as they can make it difficult to hand over your notes. It will surprise you what you will find. It takes up to 40 working days to get them so when you have them read through it all and highlight anything you think is important. I Found illnesses I hadn’t been told I had and results from tests that highlighted I was ill yet was told I was fine. They will give you answers. The NHS is in a terrible state and It’s all about cutting costs at the moment which is very annoying for us. Bloods done six years ago will need to be redone as I have had several tests and blood tests done over the last 10 - 20 years and am only now showing positive for lupus and other auto immune diseases. You could try seeing a gp privately at a spire hospital in Leeds. You pay £90 and you have half an hour to go through all your concerns. A rheumatologist dr Jarrett who’s excellent there will cost just under £400 for an initial consultation and a follow up appointment. He also does NHS. Research every symptom and condition you have. All this takes time but you will see benefits. Also I have heard good reports on st Thomas hospital in London. I wish you all the very best. Elena
Thank you Elena, lots of great information for me to have a look at.
I have seen a private Rheumatologist in London, which seems to have upset the apple cart. Recently I have received my notes for PIP, but they didn't include any blood work. I have Hypothyroidism so I have to have blood work as well as anaemia. I Paid £50 for notes and £300 + travel costs and paying someone to take me. It all gets a bit too much.
Thank you so much for your input, everything helps at this point.
I think some docs put us in an impossible position since they ration healthcare while pretending they don't (better if everyone was honest, I think) and then get annoyed when we go private. Keep persevering though. No matter how long it takes, find a doctor who listens to you.
I've had quite a lot of success with going to a private 'functional' doctor too. She discovered lots about the state of my hormones which isn't helping the Lupus.
Ohhh Ria! Please ask for help. I know how bottom feels. Are you on your own? Please reach out to me or someone. PM me if you would like, maybe there is something we could do to help each other.
I'm sorry to hear that you have been experiencing a lot of stress related to your healthcare. I would encourage you to please not just stop though as with the right team and treatment things can get much better.
Was there anything in particular that triggered this? Is your GP approachable? Could you make an appointment to discuss it with them and see what steps to take next? If you need recommendations of good lupus specialists in your area we can help with this.
If you want to talk to someone, please let me know. We have a network of trained telephone contacts who have lupus and can be an understanding ear.
If you need more information and advice about coping with depression, stress and anxiety and the support services that are available, please take a look at our article here - lupusuk.org.uk/coping-with-...
I believe you are unwell and I would love some in the medical profession to spend a week with our symptoms, and work. It would be more ethical to have actors as patients of course, but the medics are not to know that. Oh, and let's have it happen during an inspection by the Care Quality bods.
Other than that, Paul's suggestion about PALS is the way forward.
If anyone here is feeling very bad indeed about what they are going through and just need to talk rather that write, which can sometimes be hard to do, call the Samaritans. They listen with compassion to any troubles you have. You do not have to feel suicidal to call them.
As others have said, PALS is your first port of call.
You could also consider writing a letter to your MP. I’m a little cynical about MP’s however they’ll do almost anything that might make them look good.
If your MP picks it up at the very least you should start getting meaningful communication and coordination with your care.
In any correspondence remember to add a few positives about care, it’ll make a difference.
Thank you Jim, good ideas and yes you must always keep some positives on the table. I will try and get my self back to my positive state and write to MP.
Hope you are well today 🙋♀️
Could be the area (?).
Did you say you are in Devon, West Country, which is one of the most beautiful parts of the world?
I often think that wonderful "paradise" does have some downs.
I am also quite cut off as well. My previous location where I spent most of my life wasn't too great, either, and then people, living nearby a well-reputed, large hospital says, they struggle.
I have also seen some posts by people (with serious enough conditions) who are originally from abroad had to get a "decent" medical attention in their home countries. With the NHS, people worry that even if they spent months with them, you might get nowhere and die if you are unlucky.
Still, there are other patients, who do live nearby the centre of excellence, commenting NHS got much worse and complaining.
I'm going through a formal complaint for 18 months which might say something. MP was "involved" but didn't help at all. They/the hospital did, however, admit that they tried to "silence" my complaint over the course of months on the PALS level. Yes, PALS. Some PALS do side their consultants, not their patients. I think it's an area where there's an outdated belief system where doctors deserve "respect" unconditionally whilst patients do not matter so much (they just take "our" resources away).
BC often comments on sexism in the medical system. I'm pretty sure there are all sorts of "isms" to be used against patients when they are looking to "expel" patients that may cost too much.
Lastly, as someone else also commented on, EDS has no place on NHS. Nobody knows what it is if it's EDS III/hypermobility. It seems that they are not all the same, but there are no definite medical science/lab tests to support which collagen is actually deficient in anybody's case. They say, it's not autoimmune/rheumatic but most people are affected in their joints/ligaments/nerves etc (and poss more). Maybe, in 20-30 years time, they might find out that it was another rheumatic disease or some overlap disease.
Dear Ladyuponthelake. When I read posts such as yours I feel in despair, too. Not because of you - but because of the way some patients are treated by parts of the NHS. I am so sorry for you.
From scanning through the replies you have already received, I would agree that PALS and taking up the referral to the Pain Clinic would seem the way ahead, at least at present. As Barnclown says the Pain Clinic can refer you on.
I would also like to pick up on what TwitchyToes has said: that rheumatology is not an exact science. I have been under the care of an excellent rheumatologist for a few years now and he has always highlighted this, as have two of his colleagues on the occasions I have seen them instead. Plus the NHS rheumy you mention is relying on blood tests that are six years old?? This seems incredible (and incredibly sad) to me.
However, if your GP is on your side, then you might ask them if they are able to run some bloods, assuming Dr Hakim has not already done so. I am in Scotland and we have a devolved health service, so things may be different in England, but certainly 8 years ago a GP here could order a set of tests - which I'll call an immune panel, as I don't know what it is officially called - which include ANA. Then the 'standard' bloods, which a GP can certainly do, include things such as platelets, white cell count plus a breakdown thereof, CRP and ESR.
It is awful that you are having to fight for this. I have been having my own battle with gastroenterology, via my GP - who is supportive of me. Having gone private in utter desperation and because I had no more energy to fight, they have now refused to see me. I am in the process of wondering just where to go next. So I send you all good wishes and really hope that by pursuing the routes suggested in people's responses you will start to make headway.
I agree with your suggestion of a g.p. repeating blood work. In fact, this may be the medically appropriate thing to do. There are guidelines for referring a patient to specialists and doctors may be under pressure to follow them. Rheumatologists are becoming in short supply and waits long for cases in which medication should be prescribed early. Unless a doctor has suspicion of an autoimmune disease, they are not supposed to be referring to a rheumatologist. Staying with a good g.p. who can see symptoms evolve over time can be the best strategy. It is very tough when people have joint and muscle pains with no clear diagnoses. But if it is an autoimmune disease, it can take time to declare itself. All the testing in the world cannot make that happen. Hope testing becomes better.
Thank you so much. Funnily with instinct I called GP and Pain Clinic. Luckily I'm currently with the Pain Clinic with a group. So I'm in a bit better situation of not waiting. So now I need to contact PAL and ask the GP for any and all blood work.
Dear Ladyuponthelake, I am so sorry to read that you feel let down and unsupported...totally understandably. Such emotions are quite usual with lupus, in my experience and from my research. Others are correct, you have done exactly the right thing in reaching out, and it is so important to ask for help and keep talking...the Samaritans are specialists in despair and can be there for you 24/7 too. My thoughts will be with you that you will find unexpected answers and help in new places and that these awful feelings will pass. With my very best wishes. Lily
Dear Ladyuponthelake, I sent you an email re: permission for your quote in my book last Thursday. I sent it with considerable trepidation because I know that you have really been going through it recently including being unable to eat only recently.
I have been wondering if you had a) safely received it or b) whether you had been up to responding. If you just send me a mail to karendm@btinternet.com, I can do most of the work and mail back the quote which you can then just okay....if this would be easier?
You are my last one to receive complete permission from so I do hope that this mail is well timed and that you have continued to rally. If you need more time just let me know. Of course, you can opt out and I will totally understand; remove you from the text and leave you in peace on this one. With very best regards, Lily (Karen D-M)
Dear Ladyuponthelake, we have corresponded recently when you were having a bad time and I hope that I find you have rallied and in a stronger place.
I have a problem! After speaking with my Publishing Services Associate about your quote for my book, she okayed me obtaining permission from you, which I did, and supplying a copy of that via a screen print of the correspondence. Having done this she has now come back and said that although I can use your forum user names in the text to protect your anonymity, she needs a higher level of evidence to authorise the use of your quote and meet the legal requirements for international publishing copyright.
She has confirmed to me that “The permissions that we are looking for are for our content guideline purposes only. Their real names will not be included in the book”.
So in order to be able to publish your quote in my book attributed to Ladyuponthelake, Mary has said that: “The permission must have the full name of the person granting permission and their email address”.
I would therefore need you to use your email address, rather than the forum, to mail my private email address which is karendm@btinternet.com with permission to use your words, signed with your full name.
For clarity I would also need you to cut and paste the quote as it appears in the text which is as follows:
Ladyuponthelake
“knowing has helped immensely. You can accept anything once you know what you are dealing with”.
So in summary, if you are happy for me to use the quote, you would have to:
Email me on: karendm@btinternet.com
Cut and paste the quote.
Give me permission, as you have done before.
Sign with your real name.
I promise that I will never use your private email again for correspondence and would always use the forum as usual under my username Lily77. I can also assure you that your real name will not be used either in the text or the references where it says “Quote by kind permission of Ladyuponthelake from the UK Lupus Forum and in the Gratitude section where I specifically thank the individuals who have kindly let me use their words for the book.
I am mortified to have to ask you to do more when you have already been so helpful and I do understand if this is a step too far for you or is too complicated when you are already dealing with lupus. I feel strongly that my book will be so much less without your wonderful quote. It is 57,700 words and ready to publish but I will understand your decision either way. With very best regards Karen (Lily77)
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