I was diagnosed in December 2022 with RA and began methotrexate in January this year. I’ve had a really rough journey with this medication and prepared myself to ask the consultant if he could change me to an alternative. I saw him on Monday and to say I am disappointed with him is an understatement. He now wants to leave me for 8 weeks with no medications at all “to see what happens”! Now bearing in mind I had a massive flare in December, which made me very ill, I’m very worried that this will happen again.
The consultant hardly looked at me and didn’t want to listen to what was happening to me. He said, after squeezing my knee and elbow, he now thinks it’s fibromyalgia. Now I was diagnosed with this in 2014 and I know how it affects me. Totally different to how I’ve been with RA and there are so many things that I have experienced that link with RA, such as high CRP, ESR and ACCP was off the scale. I also have carpal tunnel, severe anaemia and other issues, as well as the main symptoms of RA. Two of my GPs both felt it was RA and were very insistent about this late last year.
I’ve been very tearful this week and although I’ve tried, I can’t get the sadness and anger I feel about how this doctor treated me. He was dismissive, disrespectful and rude towards me. The nurses have been great and very supportive when I’ve seen them each month. I know my body and yes, I know I’m not a doctor but all the evidence supports the RA diagnosis. I just want some different treatment that will help me, not make things worse.
Sorry for the long post but I’m feeling pretty upset and worried 😥😥😥
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Kati66
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I am sorry to hear of your experience, I think we’ve all been there at some point. Have you had any imaging such as X-rays or ultrasound to consolidate your RA diagnosis? Unfortunately the CRP & ESR are general inflammatory markers, and will be raised even if you have an infection or sometimes injury, so those alone cannot confirm diagnosis. Also GPs are unable to diagnose RA, they can suspect and refer.
You are well within your rights to get a 2nd opinion. You can either approach the rheumatology department and request to be seen by a different consultant, or you can go via PALs. Your other option is to get your gp to refer you to a rheumatologist at a different Trust. You should be able to work in partnership with your consultant, which sounds as though this is unlikely in your situation.
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Wishing you all the best.
Believe me a rheumy who doesn’t want to chop & change DMards too soon but wants a few weeks to see how things develop is not disrespecting you…he is taking a tried & tested route….that hopefully will mean you settle on Mtx…or move on to something that this doctor thinks will help.
But after your next consultation…if you still aren’t happy with this doctor… .ask your GP to refer you to a different rheumatologist.
With RA it is unfortunately not easy to find exactly the right drug …so don’t despair…you will find “the one”…hopefully very soon.
The consultant isn’t doing that AC, but pulling her off drugs completely. She’s been on MTX since January so legitimate to think about changing after 8 months.
In a situation like this it is the time to listen to a clinician……if you read through a lot of research it really does appear those who don’t do that don’t do too well..it is a personal decision….RA is not one size fits all.
Rheumatologists may be specialists but they don’t know individuals, their bodies or experiences. I absolutely believe I have a right to be heard and to be a major part in making decisions about my treatment. The days of cow-towing to doctors are long gone, and that is a good thing, in my book.
I might add, I am doing quite well thank you. I respect my clinicians one and all, and they respect me.
Stand up for yourself, know your condition, keep up to date with advancements in approaches and medications… it’s the only route for anyone, in my humble opinion.
I've found during my journey with RA I've had to be an advocate for my health; Consultants/Drs should work with patients (written in the NICE guidelines) and should take your feedback into consideration.
I've pushed for a second opinion and was right to do so, I find the idea that all Dr's are oracle's and we should just accept what they say is archaic, they should be working with us and take the time to explain why and how they've come to their opinion.
After all its us that has to live with these decisions, not like its the Dr's who are going to end up with the consequences!
I would try and get referred to the closer hospital like you suggested. Good luck and hope you find some relief
Totally agree with what you said. We know our bodies better than anyone. Although we rely on doctors to help manage our conditions, they are not always right. I’ve spoken to my GP and he is referring me to the other health authority. Hopefully I don’t have a bad flare. GP said if it does flare, to contact them. I’ve also found out that my kidney function is low and have to get a repeat blood test in a few weeks. Xxx
Please understand that Doctors are perfect and know it all and must be respected and you must follow their orders at all times. To not do this is to offend them. They must not be offended - it damages their poor egos. How would you feel if you were earning a six figure salary and only working office hours and had everyone showing you massive amounts of respect and admiration which you had not earned and you had a patient that was genuinely worried about their health and wanted answers and was wanting the Doctor to sympathise and actually help them. This is far too much for the poor Doctor! We must do all we can to keep these Doctors happy and support them in their very hard jobs as we must remember that they are very poorly paid and must be worshipped daily at the hippocratic oath shrine as the constant praying will hopefully remind them to do no harm as it`s not good if they kill their patients as some are not quite sure what they`re there for! It`s hard work sitting on their backsides doing nothing whilst writing prescriptions for paracetamol with handwriting that is so bad that even a 5 year old can do better.
Please donate to the Lobotomy Doctor`s fund so they can have a brain transplant for when they get bored playing with the McHappy meal toys that also came with a medical degree. Their brains are too spongy and can`t handle anything too complicated so they need new ones every so often.
Also I`d like to take this opportunity to raise awareness for the fact that Doctors don`t get enough holidays. We must ensure that they get at least 6 a year to every luxurious holiday resort that will take them - some holiday resorts however will not take them as the poor Doctors didn`t understand that you can`t defeacate in the bidet! Whatever you do, please don`t send them on cruises - they can`t tell the time so they often miss the cruise ships when on the day trips.
Some good advice I was given was to write down in very big scrawly writing (Doctors can`t read legible writing) what it is you need/want as this helps them understand what you mean. If you tell them in an articulate, clear way what is happening to you, the poor darlings won`t understand as it confuses them as they haven`t got the emotional or intellectual bandwidth in their brains to comprehend what you`re saying.
Let`s all pray for our doctors as they really have it so hard!
Meanwhile watch this comedy sketch if the above hasn`t given you a laugh!
Criticising doctors who are rude to patients or unhelpful is totally understandable. Most doctors, however, including rheumatologists are very caring, diligent, hard workers, doing their best. Supposedly ‘humorous’ generalised rubbishing of doctors as was presented in the post by Celtic dancer is unacceptable and not remotely funny ,as far as I am concerned.
Disagree- many of us have had uncaring &/or incompetent medical professionals- & have been irreversibly damaged - the Hippocratic Oath has been optional for years-
My dr in the US just sent an email stating that she is no longer taking any medical insurance at all (& she sells expensive products in her office -everything from cbd oil to vitamins to sunscreens).
I’ve had several that were actually sadistic & withheld treatment info - because it was more time consuming to explain & process the paperwork. (I’ve also had several that covered up a colleague’s mistakes.)
You may have to wait 3-6 mths in the US for an appt (even with a primary or NP) & the first thing they ask is, “What insurance do you have?”
You can’t even have your own dr in the hospital-you are assigned a “hospitalist”….
A close friend recently died from internal bleeding because the hospital sent him home too early (due to gov regulations & fines on extending hospital stays).
Most of the experiences you describe are a consequence of USA having a health insurance based medical system, as opposed to NHS in U.K. That is not to say that our system is perfect by any means and doctors like all of us are capable of making mistakes. As I said in my reply to Celtic dancer’s post, there is nothing wrong with criticism of doctors who disregard what their patients tell them etc. but that is not an excuse for generalised rubbishing of doctors in such a ridiculously pathetic way. Patients have responsibilities as well as doctors. As patients, we need to see the doctor/patient relationship as a partnership, if we are to get the most out of it ,especially as most of us in this group are living with a chronic illness and will need ongoing care. If we feel the relationship has broken down, depending on where we live in the U.K. we usually have options to change our specialist or GP and we should make that change as we need to have confidence in the health professionals who are treating us.
Again, I disagree. This is a comment board & evidently that post expresses the feelings & unfortunate experiences of Celtic Dancer: & so be it.
Glad you have been fortunate in your experiences as a patient. Many have not & this forum (& point-counterpoint on topics) is often a great help,
The US medical system has become worse with increasing government involvement & LOWERED professional standards & ethics. It was excellent years ago. (If you have $, “connections” or drs, nurses in your family or thru friends- you can navigate exclusive care.)
Many older doctors have retired here because the government & colleagues interfere with what they consider practicing “good medicine”.
Open forums will always present varying opinions & experiences.
Nothing to be gained by discrediting another person’s feelings & misfortunes.
Celtic Dancer’s recent post did not actually mention any unfortunate experiences of her own. She just launched into an insulting unfunny sarcastic tirade about doctors in general. If you find that acceptable, that’s fine , but you and I will just have to disagree on that one.
I think her post showed a severe lack of sensitivity and regard for health professionals who mostly do their best to provide you with the most appropriate treatment. If you are happy for this forum to degenerate into a form of Twitter where users feel they can rubbish and insult doctors etc. then fine, but I am not! I think the function of the forum is for mutual support, where people can talk about experiences with regard to their disease and sometimes for advice.
Perhaps the moderator should have considered removal of Celtic Dancer’s post in the first place. I really can’t believe that people actually read that entire post and did not feel that it was entirely inappropriate for this forum. It was not remotely humorous, just sarcastic and insulting and totally unnecessary.
I thought it was fine to be fair. I live in the UK and I have to say I've had a mixed bag of care. It's bordering on impossible to actually get a face to face appointment. My poor elderly neighbour came round to mine in tears. To say she has been gaslighted by the medical profession is an understatement. Her poor hands are swollen beyond recognition, and she is in desperate pain. I know there are some good medical professionals out there, but this runs far deeper than medics. The NHS has lost its way and the most vulnerable in society are suffering.
To be honest I think we should all be up in arms about this. Nothing will change if we simply ignore the mess.
I don’t think it is abnormal to defend a group of people who are being unnecessarily insulted and rubbished under the pretext of humour. I hate generalisations about groups of people because they are not relevant.( not sure what you are referring to re abilities and dispositions)
I have had some appalling treatment in the NHS, but have also had some good ones too and I'm sure many of us can say the same in the UK. Some of these bad experiences have added to the decline of my health, both mentally and physically. Things are missed and sometimes this can be a genuine mistake down to miscommunication or conditions that are hard to diagnose, but I think we all know when we're not being listened to, being dismissed and not having out symptoms look at thoroughly enough. Some consultants do not listen properly and unfortunately, it does seem to be rapidly getting worse, to the point where it seems pretty dangerous to me.
If you have always had average to good experiences, then I think you're either very lucky or haven't had much interaction with consultants. This ruins people's lives and has certainly derailed mine significantly. And when you think about people's lives being ruined in real terms, not statistics or stories about people you don't know where you can distance yourself emotionally, you can't go back in time to set your life straight again. It's gone forever. It isn't being about being petty or having rants, this is genuine and understandable frustration.
I have no problem with people talking about the difficult and sometimes very painful experiences they have had with regard to various health professionals. I was diagnosed as having RA in 1977, aged 21, and inevitably having had several different rheumatologists over that time, it has not always been perfect. Nevertheless I do have a problem with the type of unnecessary sarcastic generalised rant about doctors that was posted the other day by Celtic dancer. We can surely discuss any difficulties we are having with regard to the healthcare we receive without degenerating into those sorts of posts.
It is very much frustration as many of us are in our older years and living with treatment that doesn’t work or does us more harm, takes away from enjoyment in our lives.
Also the ability to work and support ourselves. The impact on mental health when outcomes of treatment do not go well is very debilitating and demoralising. Xxx
If so I do not know how this doctor could disregard the finding .
I have Lupus I have had ANA very very high at times and other times high normal or normal .
But take Predisone 5 mg AM and 2.5 mg PM so I feel that is probably why ANA no longer shows high .
I had a Rummy doctor like this a few years ago .
Very disrectful of me, tried to tell me I did not have Lupus ( after 25 years of having it )
I went back to my regular doctor and said that doctor is a rude SOB and I will never go back to see him again!! And I did not .
You know your own body and your own health , so fo not let any doctor treat you this way .
Ask your doctor for some Predisone. Any thing 10 mg and under is considered low dose .
I broke a 2 1/2 year Lupus flare by one going up to 12.5 mg for 3 weeks then slowly coming back down to 5 Mg AM and 2.5 mg PM.
I went down 1/2 mg a week . Seemed like it took forever but It worked . No rebound of symptoms.
I feel better than I have in 2 1/2 years !!!
Yes I still take my Tylenol 2 times a day... AM and PM
But other than that inflammatory response is way down ,pain in joints ,muscles , tendons and ligaments is way way down . Sciticia pain is way down . I have more energy and renewed happiness in life( with pain level down from 8.5 to 3 ) at 69 years-old.
See if you can get a doctor to give you Predisone then come down to a manitance level very slowly .
Have you complained?if you do they will change the consultant, they are not immune from the feedback, the Hospitals are very good if you complain it's in their interest as they are responsible for your health and treatment. I have a very good consultant but the first one was useless I told them what I thought of them, you can also find them on trust pilot as well?and provide feedback,good luck.
I am going to complain but waiting to get a new consultant first. The one I saw was “running late” and I felt that I wasn’t important enough for his time. 🙄🙄🙄
You are entitled to a second opinion/alternative treatment. I am currently working on being moved from my hospital to another with the help of my GP. The nurse and doctors are ok when you have an appointment, but follow up nurse care is non existent and the admin is awful. I did some research, found an alternative hospital slightly further away, and my GP is working to get me moved. Did they do any scans to confirm the diagnosis? Mine was confirmed with a nuclear scan in December of last year. I had a reaction to two DMARDs and after a long wait, managed to get onto Biologics. It sound like your Rhumy is disinterested, try to see if you can be refereed elsewhere - it’s your right (even on the NHS).
I had X-rays of my hands and feet, which showed osteoarthritis but no damage from RA. What I don’t understand is why they don’t scan the swollen joints and fingers in some way. My wrists were double the size they used to be. All I wanted was to change meds, as I thought after a decent trial of metho they would see it wasn’t working and the side effects outweighed any benefits. Instead, I was told wait 8 weeks with nothing. I really don’t want to be in the medical situation I was in last December again 😱😱
Definitely push for a second opinion, it’s not right that you are being left like this. My appointment for the alternative hospital has come through for next year (May), had I not started Amgevita I would have pushed to see if they could see me sooner, but in this circumstance I’m ok to wait as it’s under control. If I were in your shoes, I’d ask why a nuclear scan was not taken (they scan you, then inject you & scan you again) this detects changes in your joints. Wish you the best of luck.
That's helpful to know about the nuclear scan! I also only had x-rays for hands & feet, along with ultrasound of fingers & toes. They said both were clear, but the ultrasound did show signs of inflammation in toes, because they showed me on the screen during it. They also said all my blood tests were normal, but I've since had the results through the post which say the ANA was positive. I do realise it isn't personal, but they must be investigating some people properly and not others. When they make some of us feel like we're hypochondriacs, it's hard to challenge that without reinforcing it.
I was only diagnosed after a nuclear scan. I was told the synovial thickening on ultrasounds was nothing, rheumatologist* ignored my back pain (we now know my spine is riddled with inflammation), wouldn't even look at my finger when I said it was swollen, she actually snapped at me for querying an explanation that made no sense with my symptoms, she discharged me, told me I didn't need a rheumatologist and said I should just take up Pilates. Then I had the scan and it was so immediately obvious the radiology team told me to go straight over to the rheumatology department and ask for a follow-up.
Then suddenly all the other things I'd previously been told were nothing were apparently relevant. It's maddening.
I've got some bowel problems now and initial testing showing nothing but I'm reluctant to push for more investigations or referral because I don't have the energy to go through it again.
Yes, I totally understand 'I don't have the energy to go through it again'. And it makes me even more angry that it doesn't have to be this way. I've had two referrals to Rheumatology in the past two years and left with "it's just primary Raynaud's, don't worry!" and "it's just good news, it's just Fibromyalgia!" It's taken me to two months to chase up the second opinion, as I just keep getting upset over the whole thing (and whenever I got upset she would say "you just look SO much like someone with Fibromyalgia!") It makes you wonder how many people are happy with consultants, as this forum seems absolutely jam-packed with people, almost always women, saying the same thing.
I've got bowel problems too - GP referred me on the cancer pathway around March. I had colonoscopy in May, which showed some inflammation and told Gastroenterology to see me "urgently". I had an appointment this month, but it's since been put back 6 weeks to end of November. I'm fully expecting "it's just IBS", even though I suspect it's connected to all the other problems. I was seeing them last year, as GP thought it was Coeliac disease going by my blood tests, but that ended up being "just IBS" too. I get a headache just thinking about these appointments!
I think she meant with my history of depression and probably appearing anxious & upset. I'm pretty sure lots of depressed people don't have Fibromyalgia, just as lots of people without depression do - it's insulting to everyone. My psychiatrist said it sounded like they used it to pigeon-hole me. I have autism & ADHD too, so probably just appear anxious all the time, even when I'm not.
It doesn't help they have this bizarre set-up of a student doctor who does the "assessment" then goes off to discuss it with the rheumatologist, then they both come back and tell you what they think it is. The result is that you feel neither of them did the assessment properly.
I think as women, we are often ignored, and the default answer I've found is 'take 2 paracetamol 4 times a day' or it's been inferred that it's all in my head. In my teens, I was constantly in pain (stomach), vomiting after some meals, and exhausted all the time. GP put it down to growing pains! Took my mum, refusing to leave the GP until they took blood as she could see there was something wrong with me, and she not normally that insistent (at the time, the GP said to my mum, she's okay, the inside of her eyelids are pink, she's not anaemic). Blood tests came back, and there was practically no iron in my blood, which kicked my GP into action. I won't go through everything here, but it was a very long process, over at least 12 months, maybe more. They had started by blaming my periods (they were very heavy). There was talk about sending me to see a psychiatrist, too, as it might be all in my head! To this day, I still don't understand why, when my blood tests were abnormal, I just think they didn't know what it was, so they wanted to blame me. Just when they were about to refer me to Guy's Children's Hospital (after I'd been prodded within an inch of my life), a locum happened to see me, read my file and sent me for an endoscopy, and it turned out I had coeliac disease.
I've also had musculoskeletal & joint issues and pain for years, constant fatigue - if you look at my online file, fatigue features every single appointment, and my hands have swollen on and off since the age of 16, as well as having high white blood cell counts consistently for years. I've gone to the GP on and off for years (the paracetamol comment was used regularly), and the high white blood count was either blamed on my Coeliac disease (I'm very strict with my diet and avoiding even traces of gluten) or been told it's probably just you and "your normal, is to have a high white blood count".
It was a chance encounter with a physio after I kicked off at being ignored for an ankle injury that was coming on to 18 months. The pain was not going away, and my walking was so severely limited that I was told, 'You have two autoimmune diseases (coeliac & psoriasis, which thankfully is limited to my hairline and stays in remission most of the time). Have you ever experienced xyz' (long list of inflammatory arthritis symptoms). I said yes to most and said, I just thought I was getting older - I was 42 at the time. He said to me we should have been monitoring you for inflammatory arthritis since your first autoimmune diagnosis as you are at much higher risk. He referred me to the Rheumatologist, and that's when I got my diagnosis (although the first thing said to me was Fibromyalgia).
I now push back, I now research (I was given methotrexate without folic acid, and when I questioned this, I was told, "Oh we forgot to add it to your prescription. I'll do it now". The only way to get better treatment is to advocate for ourselves, be informed and push back when we are not listened to. I had researched my high white blood count a few years back, and Rheumatoid Arthritis kept coming up. I wish I had put two and two together (I know I'm not a doctor, and it's not my job). However, had I done so and asked the right questions, I might have been diagnosed 4 or 5 years ago.
I wish I was more surprised by what you've written, but instead I'm just nodding because so much of it sounds familiar! I think I was fobbed off less as a child, but I do remember my Mum putting her foot down about things and I did once faint quite dramatically at the GP, which probably made them a bit more cautious.
We thought I had coeliac a couple of years ago, as although my test was negative, my IgA level was also low, IgM high and I do feel better on a gluten free diet. The gastroenterologist was reluctant to do an endoscopy (which I've since had for other issues anyway), so did a genetic test which ruled it out instead.
I sometimes have low white blood cell count, which they just test until it goes back to normal level then say it's fine. Doesn't seem the safest way to work out it's "fine" to me and does tie in with some autoimmune diseases.
The NHS website says "If you have psoriasis, you'll usually have an annual assessment to look for signs of psoriatic arthritis", which I've never heard about despite having psoriasis for about 30 years. Mine is mostly scalp too, although I do have patches of something on my lower back at the moment, but can't work out if I can be bothered going to the GP again. The rheumatologist asked me to show her my psoriasis and then seemed suspicious I had it at all, yet when I asked why I had nailfold haemorrhages said "oh, that'll be psoriasis"! So, it seems I can't have psoriatic arthritis until I can prove I have psoriasis, yet at the same time I can't have lupus or systemic sclerosis because that's down to psoriasis. I think my brain is going to explode at times, trying to work out their logic (or lack of it!)
Fully understand how you feel, it's almost like medical gaslighting.It's probably best to speak to your GP and see about transferring consultants. Some people just don't get on and that's ok.
You may not have a flare in the two months and if the mtx isn't helping your body could have a rest from it.
I'm assuming he hasn't ruled out trying other things in two months.
I too have been very ill(in hospital for a week) with a flare but when it happens it will demonstrate what's going on.
You are right, it does feel like medical gaslighting!!! The GP has now referred me to a different hospital so fingers crossed I get the appointment through in the near future. I’ve got two GPs that have really fought my corner with RA so I’m lucky in that context. Xxx
First of all sending gentle virtual hugs . You deserve better than this. I once had a consultation that left me cross,sad and tearful. I told my GP and she said complain which I did. Long story short I did,he was investigated and I had a written apology. The investigator was a different consultant and she said to my GP she would be happy to take over my care. I never looked back. Take back the power and do what's best for you. Be strong because you matter.
It does make you feel pretty worthless when a consultant doesn’t listen. I had this once with one my son saw when he was younger (he has cerebral palsy) who tried telling me he had dyspraxia!!
I’m glad you managed to sort out a great doctor now 👍🏻👍🏻👍🏻
I had virtually the same experience as you Kati, don't give up. My consultant took a cursory at my knees and my wrists and said, I think ill send you to physio, when I could barely stand. I went home and sobbed my heart out. I was in agony for over 3 months to the point of arguing with my husband and wanting to take a whole bottle of paracetamol. Please don't let that scare, you I'm just being totally honest. It was a fleeting thought said in pain and anger and one that I'll always regret. I saw my gp again and said doctor I feel so ill I would admit myself to hospital today and he did. Having fought to get another appointment with him I was then accused of lying about my pain. That was it, the only saving grace about him was that he gave me an antibiotic for a cough I had, which subsequently put me in hospital, it was then I found out that my inflammation was off the scale and that it had started to damage major organs. I was so angry, one day he came running into the hospital room saying what are you doing here. I basically said don't you ever give me that tablet again. At that point I found myself making the
decision to demand to see another consultant, she saw me for half an hour rather than 2 minutes. She found the fluid on my knees as well that I had been told countless times was non existent, and when I asked if I could become her patient, she told me that she had had had hundreds of requests for the same thing from my consultants patients, and that if I asked she cannot refuse this. I thought well hundreds of patients can't be wrong and I replied well doctor I'm asking!
Sorry for the long post but over the years I've learnt,
1. Value yourself and your own views about yourself.
2. Don't accept things at face value and ask questions or challenge.
3. Be firm, but persistent and fair.
4. Self management, is vital and whilst it can be worrying at times it can also help support your views. I take my own Sat's when I feel unwell, and if they drop below a certain level I have to go and can give this info to nurses etc.
I agree about taking responsibility for your own health measures, as well as the doctors. I take my blood pressure (heart medication may make it too low) and keep a record of all my blood results. Problem is, this consultant doesn’t want to know if you have a short list of questions. I find I forget things easily so a list helps.
I’m sorry to hear that you became so ill you considered taking your own life. What an absolutely awful consultant you had 😥😥😥. I know that no doctor is perfect but I do wish they would listen to us, after all we are the experts in how an illness affects us!! Xxx
you must speak to your GP, yes, you know your body. there will be other Rheumatologists that you can see. No wonder you feel low. I find the Rheumy nurses are great, complain, and if you are not up to it, get a friend or family member to support you..this is just not good enough...keep on at them until you get prope rhelp x
I’ve spoken to the GP now and he’s referred me to a different hospital. The nurses in rheumatology were really good and noted down all my symptoms each time I saw them. It’s a shame I’m having to change hospitals because of a quite frankly, ignorant consultant 🙄🙄
Hi please read this it really helps me when I think people don’t understand what I am feeling physically and emotionally my daughter found it on Facebook:
You have the right to the appropriate care and support, sending big hugs 🤗 xx
My favorite quote from a doctor was, “It can’t really be that bad if you are still doing everything you do.“ I told him I didn’t know I had a choice. Years in pain, tired and the many changes in me for no apparent reason... Hiding everything from someone else, pretending to be doing better than you are, until it no longer works. No matter how strong you want to be.
Then the moment comes when they tell you what you have... You have mixed feelings: you finally know what you have, but how do you deal with it?
Lack of encouragement, wanting to lie down, taking medication frequently; having a whole pharmacy on top of the nightstand. Then, the daily responses, "Why did you get so fat?" “I have this great diet, if you would just go out and exercise, you would feel better.”
That once beautiful hair of yours is now awful and it falls out. What has happened to you?
This is all true and that's why I'm sharing it!
Silent and invisible diseases do exist... When you have an invisible disease it is difficult to argue from your perspective with ignorant people. Life takes a lot of turns!
Tired of being told:
* Did you go to the doctor?
* Have you tried this?
* Have you tried that?
* I don’t know what else we can do for you...
Yes! I tried, and still I try everything!
Doctors say this disease is forever. That I will not heal. However, I am not giving up, but I want to make others realize:
* A nap will not cure me but it will help me...
* I am not lazy, I take medication and it
sometimes makes me sleepy…
* I am not angry but sometimes cranky with pain…
* I struggle daily with pain, mobility problems, fatigue, the criticism of my environment…
Most frustratingly, people look at me and say, "It can't be that bad; you look good." Despite the fact that my body is experiencing excruciating pain everywhere, of course I look good, I always try to look good, it is an "invisible" disease.
This disease affects me physically, mentally and emotionally. Because rare autoimmune diseases cannot be seen, but we feel them. And they are there... Silent attacks are extra painful.
I AM LOOKING AT THOSE WHO TAKE TIME TO READ THIS POST TO THE END.
Please, for me and in honor of someone who fights against:
-LIPODEMA
-Lymphedema
-Intracranial hypertension
-Sarcoidosis Disease
-Lupus
-MS
-Crohn’s Disease
- Ménière’s Disease
-Addisons Disease
-Hashimotos Disease
-Graves Disease
-FND
-Depression
-Anxiety
-PTSD
-Autoimmune disease
-Sjogrens syndrome
-Polycystic ovary syndrome
-Rheumatoid arthritis
-Chronic pain
-Endometriosis.
-Multiple sclerosis
-Myasthenia gravis
-Pulmonary hypertension
-Chronic fatigue syndrome
-Diabetes
-Fibromyalgia
-Raynaud and Scleroderma
-Neuralgia of the trigeminal
-Epilepsy
-Cancer
-Hypothyroidism
-Arachnoiditis
-NEAD
-Vasculitis
-Parkinsons
-Neuropathy
-Chronic kidney disease
-Dementia
Or some other disease you don't see.
COPY AND PASTE:
But, I understand if you don't. It's okay. Type ''done'' in the comments and thank you for your support.
I would like 5 of my friends to post (not share) this message to show that you are always there when that someone needs to talk.
In support of a friend, a family member who is fighting for this disease. Just say “done” ❤️
Sorry you’re going through this. I can only echo what’s been said. I came to the end of the line with my consultant and changed to one that I’m happy with. It was a difficult time because I felt completely in their hands for my care & treatment. Also, I understand how draining it is when you’re having to battle whilst being in pain and not feeling good so ask for help. RA is enough to deal with and the stress makes it worse.
I may be wrong but I thought they used the test for Rheumatoid factor and sero positive as part of the diagnosis, has that been done?
I initially had lots of blood tests and my rheumatoid factor was negative. However, the ACCP was greater than 500 and inflammation markers very high. That along with symptoms and other associated problems, such as carpal tunnel and severe anaemia led to the diagnosis of seronegative RA. Xxx
Oh my, I have such a similar story! Recently on MTX, felt sick on it, hair fell out, and my Rheumy was useless. Maybe it goes with the territory. All the aches and pains are difficult to diagnose, and the docs try to make it easy for themselves. A good Rheumatologist would want to know your history, your symptoms, and closely monitor you on meds. Then, are THEY under prescribing pressures of any sort, OR prescribing incentives!
it does make you wonder about incentives. I know the gold standard is for prescribing Methotrexate initially but it just doesn’t work for everyone. Xxx
after methotrexate I was off medicine for two months while my body healed from the drug side effects. Wow. If your kidney function is low maybe it is good to take a break. The methotrexate could have caused this. Glad you called and hopefully you’ll get a doctor who won’t be so dismissive and will converse well so you feel confident in them,
I have a group of friends that are leaving me out of activities. The last thing that happened is that I was deleted from a group chat. It is really tough. Really really tough. Honestly, not one of them has taken any initiative to understand my illness. But with this, I hate my illness more than them. I know it is basically one queen bee leaving me out and the rest following. So when I said in my last post that it wasn’t you and that there was just one advocate and the rest following, while I believe this is true, I don’t want to diminish your pain. Who cares if it isn’t us, or if it is us or if it is just the circumstances of the disease. Who cares. It just sucks big time to see some one get flowers when you haven’t had that kindness. Hugs.
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Worried
Stopping MTX!!! Relieved and worried...
Getting quite worried 
Blood test result worried
So sad.
