Can we stop this madness

Hi eveeryone,

I say can we stop this madness because for me persoanlly i get referred to a specialist and before iv tried to explain my symptoms hes looking bored and the appointment s over. I come out with my moyth wide open thinking what was that all about.


So i post agan on here in the hope that someone may recognise some of my symptoms.

Iv been told its not RA.... Pain in joints with selling, worst pain is shoulders at upper back. My mucles appear to go on working long after a burning pain. Use of muscles cause me to oveheat very easily and i become very hot and my face. I can feel very nauseous with doing physical tasks.,I expereince some numbness and cramping also fatigue but i do have Hashimotos which could account for the fatigue.

Not sure whats going on.

Any suggestions please



34 Replies

  • Sorry that your rheumatologist just looked bored - that's really unnecessary and unkind even if he doesn't believe you have any type of inflammatory arthritis going on.

    Has he mentioned wear and tear arthritis or Fibromyalgia to you at all or put this in writing to your GP? I believe this often affects the shoulders most and causes severe pain and burning in the muscles. I would go and see your GP once his letter has arrived and talk it through. There should be pain relief you can try too and hopefully your GP can help you with this.

  • I already had a firbromyalgis diagnosis which i am not happy about. I just want to ensure that id i have a referral they are going not going to go with an easy option. I personally dont buy the fb diagnosis as i beleive that something else is going on.

    I dont think we shoild be fobbed off.....something has changed within the NHS as one time your GP could diagnose now they dont seem to have a its off to a specialist even though it might not be the appropriate kind f specialist, as least they have sent us somewhere.

    But thanks for your hyst exhausted with all this nonsense.



  • I do understand how you feel and I wouldn't be happy with a diagnosis of Fibro either for myself - although from what I've heard your symptoms do seem to correspond.

    So unless you have something going on to disprove this they will call it Fibro. As you say it can be an easy get out but if you have a hunch there's something else going on then you have to do your research and fight on.

    Meanwhile you could try some of the Fibro meds if you haven't already? Some of them work very well for the symptoms you describe - I take them and I don't have Fibro.

  • I feel it too in the United States of America. Fibromyalgia is kind of a catch all for anything that costs money or time to figure out. It's hard to accept it because after reading what fb is, we know that it's not anything like whatever we are trying to describe to the doctors. I'm right there with you yorkshiregirl44. I don't want to be thrown in the same place as others are just because of cost to figure it out. I think that it happens because surgeons are not as willing to open the backs of people to touch anything because a lot of the time those things get worse with surgery of any kind including muscles, tendons, joints, spines in the back or shoulder areas. They think that Lyrica fixes a lot of things on it's own and if not that route then Head medicine or brain medicine will work.....anything but narcotics.

  • You need to go and complain to P.A.L.S which is usually based in the reception area of your hospital. It sounds like fibro to me only because i have fibro myself.xxxx

  • "something has changed within the NHS as one time your GP could diagnose now they dont seem to have a its off to a specialist even though it might not be the appropriate kind f specialist,"

    Here, here. Couldn't agree more. So far my experience has been of a bunch of GPs who don't have a clue and then a load of "silo mentality" specialists, in respect of which, once you get into their grip, they have no interest in considering any other illness outside of their own speciality, or cross referrals.

    I went to see a GP Last month about two lumps that had appeared on the palm of my hand and whether they might be rheumatoid nodules or ganglions. He googled it on the Internet and we spent the next 10 minutes looking at it all together on Google search pages. He still didn't have a clue by the end of it.

  • Corniwhrex, I cold have written your last message... haha. My doctor did

    a diagnosis by looking at Google pictures with me too. He honestly had no

    clue so he typed in what something looked like on my leg and he hit the nail

    on the head. He did send me to a specialist. I live in the USA and our doctors

    seem to specialize in just one area and if it's not their area, they send you on down

    the line until you eventually end up in the right place. Some things could have been

    prevented in the time that it took for me to land in with the right doctor who said

    that It was too far gone and I had to travel to another specialist... I think that our

    countries are learning from how doctors in the UK do things. haha.. Actually,

    It's not funny. I am sick now because of that system.

  • Its just so appalling..two of the worlds leading countries in so many areas yet our health systems are just not working. I agreee with you that sometimes if you are lucky you will stumble across the right specialist. What happens if you are not so lucky?

    I guess we do have to keep on fighting

    Thanks Christine

  • Yep, we do have to keep on fighting. One option is to ask for a second opinion which basically means asking to see a different rheumy. I decided to go the whole hog and was referred to a different hospital in a different area just in case my completely useless ex-rheumy's colleagues closed ranks with him.

    It can also be a good idea to see a rheumy (or other specialist) privately. Yes, it's expensive but then so is being ill. I saw a very good rheumy for over an hour for £150 and had a very thorough examination and a very thorough diagnosis. That boosted my self-belief as he had an excellent reputation - you need a recommendation really.

    Quite a few diseases are difficult to diagnose which is challenging for patients. Don't despair or fall into the trap of thinking it's 'just you'. Keep a diary of your symptoms - just the main and most consistent ones. Look after yourself the best you can in terms of things such as a good diet, exercise etc. Go back to your GP when you are ready, armed with a very clear account of symptoms and as much confidence as you can muster! Say "I'm trying to deal with this myself, but I really need to know what is happening to me" (or something like that!)

    As sylvi says, PALS may help, but you will win through yourself. It might take some time but you're not alone, loads of us have had to push hard for a proper diagnosis and can support you on here ...... and it is worth it in the end, it really is!

  • Good words of advice there.thanks. I think like you said its crucial to see a recommended specialist and dont take no for an answer.

  • It took a long time for me to be diagnosed with Seronegative Spondylarthropathy (inflammatory arthritis), Joint Hypermobility Syndrome and now also have Fibromyalgia, which I think is secondary to the other two conditions. I also have an Hashimoto's. So, it is possible to have something else going on. As you already probably know, those with a Fibromyalgia diagnosis seem to find it hard to get another diagnosis. And I agree with you about stumbling across the right specialist. In my case when my GP's finally let me see a specialist (4 years after symptoms appeared) it seemed to be the right one.

    Don't give up; we often know in ourselves when something is wrong.

  • Thank you, like you i have Hashimotos and some cervical and lumber problems as well as lots of other joint problems. Got sent for physio and not going back. He said it was my posture. I get so annooyed at thei arrogance, they try to apply psychology to it by asking if you think its serious and do you work. In the past i have said i am not working due to health reasons but in the future i will be saying i do work. When i look at my day im working longer the adverage working day taking care of my son and working through this ever challenging process of finding a specialist who can se further that his or her nose,

    Sorry for the rant


  • I had a Spanish teacher in university who treated his first year intro students like idiots because they didn't intuitively know how to pronounce the letters of the alphabet with a Spanish accent. I figured at the time that he had been teaching so long and was used to his 2nd yr intermediate and advanced students, that he could no longer relate to new learners.

    Rheumatologists have sooooo many patients. They are becoming increasingly burdened. I don't have the stats, but I'm pretty common rates of new patients are exceeding rates of new rheumatologists. They see so many patients every day, some of whom they have seen for years and are well-managed, others who arrive to their offices in crisis, scared and confused. I was one of those patients. Imagine being the doctor, seeing this bawling mess who can barely walk or open a door. You know from your countless other patients that you just need to get this person's inflammation under control. You're probably tired, overworked, and yes, impatient. And you know that the quicker things are under control, the better it will be for both of you. So honestly, all they need to do at that pointis prescribe you some meds. If on the bext appt things are worse, they prescribe more, and more, until they finally find the magic combo. You feel soooooo much better and super grateful and you're finally an easier patient to deal with. I've had two rheumies so far and I've liked bith of them much better once my disease had become well-managed. I think the rheumies that show they care, that spend extra time with you and are patient while you formulate your questions are rare, and most of them only in the early years of their practice - just a guess.

    I also think that's one of the benefits of the internet writ large, and this site in particular. We're able to learn more and empower ourselves. I now write down questions for the rheumatologist between appointments so that when I see her and she quickly reads my labs, tells me her next steps for me and then moves to dismiss me, I can stop her and say, I have a few questions. Sometimes she responds impatiently, but I don't care, this is my time. In any case, she does answer my questions and I leave feeling better for at least having raised them with her, regardless of the outcome. If I just have 3 questions in mind (rather than written down), I often find myself hard pressed to remember to ask even one of them!

    So I guess that's my advice. Much as it's hard when things are at their worst to put yourself in someone else's shoes (in my case, I get mad at all the people who I imagine can get their kids buckled into and out of their car seats with ease when I couldn't), I think sometimes it can be helpful. They are people too and have actual lives outside their office hours where they are trying to be good friends, parents, children, etc. i once asked my first rheumy what made him choose his profession and he told me it was seeing the disease destroy his mother. In treating me and countless others, he was making up for not being able to help his own mother.

    Anyhow, just another thing to think about....

  • Totaally agree that they are human too and have their own issues going on and over worked. Until a couple of years ago I was a social worker in domestic violence and like them we worked under pressure with people in crisis, sometimes they had lost everything including their children and almost their lives. Not once did i ever look down on somone or ignore them or disregard their feelings or view point. Respect and a bed side manner is just as important as medical knowledge. If the ob is too much for them one is holding them at gun point,

    My next appointment with be private and if they dont treat me with the repect i expect then they wont recieve their fee..perhaps thats the way forward with the NHS that we have a budget and we pay when we get a service fit for its purpose.

    I do beleive that all medical staff are the same and some people have good expereinces.



  • Sure. I thought the Spanish prof was a jerk and I didn't exactly feel warm fuzzies towards my two rheumies. I think it takes a lot of presence of mind to be able to respond rather than react to situations. There are times when I am tired, stressed, in severe pain, and then just snap when I hear (for the millionth time) the whiny voice of my 3 year old asking for a treat. It's not his fault that I reacted that way. It's completely my fault, I shouldn't have done it. So am I an asshole? Maybe you think I am. Or maybe, having this disease yourself, you can be a little compassionate toward me in that moment, understanding that although I shouldn't have snapped at my child, it was a completely understandable reaction.

    I once asked my kids' pediatrician how he could stand to listen to crying kids all day long. He just smiled. He was so patient. But can you imagine having patients that wailed just entering your office - or upon seeing you? I would need to be deaf!

    I'm not happy with my rheumy. She doesn't remember me from appointment to appointment, can't keep her notes straight, is absolutely NOT clear about the medications I am taking (you're on Arava right? No, we agreed I wouldn't take it. Oh right. Should we try MTX by injection? Um, we already started that two months ago. ETC), and is super unavailable (I can't leave messages on her machine, I can't renew a prescription between appointments, she only has office hours 3 days/week). So I have to find out a way to make it work for me. That includes checking all of my prescriptions before I see her to know if I have enough to last me to a next appointment, and writing down everything. I don't know how it is for you, but where I am in Canada there are not enough rheumatologists, so there really isn't the luxury to pick and choose. I'm on a waiting list with another rheumatologist but was told there is a 1-year waiting list JUST TO SET AN APPOINTMENT with the new guy.

    Anyway, I think it's more helpful to try to find a bit of compassion, and then to be more proactive about your care - work with your GP as much as possible, plan ahead for your appointments (i.e. by writing down questions and bringing them to your appointment, etc). I've had enough disappointing appointments and these are the tricks I learned.

    It's fun to vent and sometimes necessary but in the end it doesn't solve the problem.

  • We all snap dont we at some time or another but if we do that at the dotors we are being abusive whereas doctors are just over worked. #

    I remember when i was very ill with crohns disease i kicked off big style and was a most challenging patient due to fear of what i was facing. The more i kicked off the better treatment i got. That was in the days when i feel that patients had more rights and staff had a matron to ensure that patients were cared for. Long gone are those days in my expereinence.

    I agree we have to take responsibility for our own health and i do that the best way i can with a little support from others or alot at times.

    We cant change everything all at once and i personally can only change me. But we dont have to put up and shut up with aything other than the best medical treatment and care that we are entitled to and deserve.


  • I do agree with you. I guess I am just trying to make a crap situation more tolerable :)

  • I can sense humor in you and thats not a bad thing. You have a small child and that must be really tough. My youngest is 17 and we are having different problems, my son was diagnosed with ASD/Aspergers, he cant leave the house due to anxiety.

    So i dont think we are doing too bad are we?

    This site amazes me, no matter where we live or what our political or other stance is we all want to get well and we are willing to share our expereinces with others, which i think is great.


  • Agreed! Sending you big (gentle!) hugs. Good luck to you.

  • Lovely chatting to you, hope things improve for you.


  • My husband is a care worker and used to work with children with special needs. He often tells me still that the parents the carers disliked were also the ones they most respected, albeit grudgingly - who got their way by fighting tirelessly and sometimes obnoxiously on their children's behalves.

    He reminds me of this when I get really demoralised with this constant pestering and pushing. My rheumy is quite charming but it's a front. He doesn't like patients who want to learn more - especially if they are women. I know this because his letters to my GP are patronising beyond belief often!

    This is your body, your life so you have to fight for it as hard as it takes. If someone makes you feel miserable by appearing disinterested and bored then I don't think you should see them again. They may be overworked but they certainly aren't underpaid!

    Ps my eldest son has Asperger's and almost got thrown out of school with few qualifications. Now he's doing a Masters degree at a top uni having got a first class honours degree! My youngest is 17 too. Hang in there and it will almost certainly get better.

  • What a lovely post....When i was younger people respected their doctor because you know who he was and he generally knew your family and was part of the community. Someone to look up to because they seemed to care and made visits when needed. No computers just a book to make appointment in...sounds simple and it was..and you could get an appointment without having to ring every morning at 8am.....i sound like i dont like change dont i..thats not true as i do, change and progression are always needed, but change does not always mean prgression.

    Its so uplifting when i hear about people like your son who have faced challenges yet achieved what they wanted to. We are not at that stage at the moment and im still learning about aspergers, my son only got a diagnosis last march, the anxiety is stopping him from doing anything at the moment.



  • It is hard - like getting diagnosed with RA or anything people can't see and often misunderstand.

    My son has embraced it now but for many years he used to get terribly angry and depressed when it was spoken about.

    Like anything else a label is only as important as it is useful.

    I think the best book we ever read was Asperger's Syndrome by Tony Atwood. It may have been superceded by others as this was when he was 8 and he's now nearly 23. But it has stayed with me as a book that is so practical and compassionate and it can be applied to many of the situations I've been in since. It is just a really good read apart from anything else. There's an Asperger's community here on HU I believe. Good luck with everything. Tx

  • I think my son was worried about the diagnosis in that he did not want to beleive it. I know he looks up things on the net bit only sees the harmful thing and not the other possibilities. His has no problem with language yet he hardly speaks, only to answer a question and hardly ever initiates conversation. At the moment he is expereincing bad panic on usually at night time going from heart trouble, cancer, bad pains in his head and last night he said his head felt strange.

    Can i ask you if your son ever saw the mental health team for anxiety or anything. The reason im asking is that we are getting an appointment to see a psychiatrist for his extreme anxiety, yet ASD professionals seem to say that therapies such cbt dont work with ASD. I dont want to do the wrong thing and the GP feels that he will have a dual diagnosis.

  • It's very complex isn't it. My son was never quiet or shy - far from Classic Asperger's just as I'm far from typical RA. Knowing about the autistic spectrum as I do has helped me to understand the rheumatoid spectrum better I think.

    My son never saw anyone about his mental health - although I admit there have been times when this has been a big issue - especially when he got to university so far away from us. However he has come through it all pretty well and I think having a diagnosis which we pushed for ourselves has helped him immeasurably in the long run. We had a very good autism support teacher who was his and our advocate when he was at primary school. But she retired and after that it was us against the secondary school often. The best thing I can advise is to look out for significant others whom you and your son trust. We used social stories a lot with him and also got him a punch bag so he stopped breaking doors! He still can get very frustrated but his long term girlfriend just has time out if he shouts too much. I'm not sure about the more introverted person your son sounds. Can you contact the National Autistic Society perhaps as they are brilliant ive heard and might suggest a more specialist type of counselling/ CBT? Tx

  • Yes iv a couple of telephone appointment arranged by telephone with the Autistic society, One of them is around social sservices and how to find the best support and the other is arounf Transition. Im looking at getting a statement for him because of his fear of leaving the house he cant go to college. Hopefully with the right support things can move forward,

    He had a few sessions of cbt at home and the practioneer said he looks normal..i was so upset, he is normal just faces some challenges. So yes stereotypical assumptions can be damaging. We are all different with or without aspergers.

    I think agencies including social care do need more training in this

    The book you mentioned sounds like something that might help us both.

    In fact i learn more from coming on this site and thyroiduk than from any other source.

  • Yes, your son sounds a lot like mine did last year. If there's any pressure on him try to relieve it. I doubt he needs mental health as they don't know much about autism. Is there a team of autism specialists that you could access? Cornwall has one. Sorry I'll stop jumping in now. Xx

  • Thats what i thought that the mental health team would not have the nowledge of ASD and i dont want him getting a diagnosis when his anxiety was due to asd.

    Can i ask if your son was afraid of leaving the house.

    We have an autistic agency but due to levels of staffing and funding they cant provide services in the home



  • Hey Christine, I just wanted you to know you aren't alone re your son (and indeed having problems yourself). I have two boys with autism. My eldest not yet diagnosed but we've had to take him out if school as he wasn't able to go in due to his anxiety. Luckily he loves music and works hard at it so he does go out for music lessons and band (rock!). Does your son have an interest you can use to get him to enjoy being social? I really just wanted to say anxiety and autism are massively linked but if you can start unravelling why (often sensory reasons) then the anxiety can be worked on in small steps. Feel free to message me. Steph

  • Thanks steph....My sons interest is compuying, mainly games, hes also very goof at cimputer problem solving. Last night was the first night in ages that he didnt have a panic attack. Where we live the services for his age group 17 are very hard to find.

    I will PM you if thats ok


  • Polymyalgia Rheumatica ? Fibromyalgia?

    I have PMR alongside RA. In fact, my variation is called Polymyalgia-onset Rheumatoid Arthritis. I have a ruder name for it.

    I was diagnosed with CFS in about 1984, but I think that has been upstaged!

    I think it's so important to know one's enemy. It may be comforting to know what it is not, but it is our right to have a clear diagnosis.

  • Thanks for your reply. I too was diagnosed with CFS and yes i have the fatigue but much more. The worst of my joint symptoms seem to come in waves.....i always feel hot when using my upper body even to do small tasks. Whatever is going on does not show in my bloods at the time they are taken.

    I have found when you get a diagnosis of CFS and fibro you can overlooked and all things are blamed on those conditions.

    I went to a rheumy last year who said i did not have RA becuase my joint swelling was not in the right place. It has only just come to me that he did not look at any previous xrays or scans nor did he arrange any others for me.

    Can i ask you what changed to get the your diagnosis after CFS.



  • I wrote a long reply, but it doesn't seem to be showing. I'm too exhausted to write it all again. So sorry. I'm ina lot of pain too. Ask me in about a week's time



  • Try to get a rest if you can and hope you have a better day tomorrow.


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