New diagnosis of Fibromyalgia: Hi, just had appointment... - NRAS

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New diagnosis of Fibromyalgia

FawltyTowerz profile image
37 Replies

Hi, just had appointment with consultant and very confused. I was diagnosed with psoriatic arthritis 5 years ago at a different hospital as well as having osteoarthritis. I have been having a bad flare up for months now. Given my symptoms now he thinks I might have fibromyalgia, and possibly not psoriatic arthritis at all. I was sat 2 metres away from him, he saw one hand and said I haven’t got any inflammation!?! He’s writing to my gp and going to reduce my methotrexate injections. It took several years for them to come up with my first diagnosis and I’m now worried that I’m going to be starting all over from scratch. He said if inflammation is not showing in blood test I will not need to take Methotrexate any more. But as I take methotrexate and naproxen wouldn’t these lower the inflammatory markers in blood test anyway? When I stopped taking naproxen for several months last year I was in agony and had to restart them. I get the feeling he really doesn’t know and is using the try and see approach. Any tips on what I should do?

37 Replies
Summerrain14 profile image
Summerrain14

No wonder you are feeling confused after that appointment. Is your consultant suggesting coming off the methotrexate altogether or trying to reduce it first? Either way so hard when you are in a lot of pain.

I have seronegative RA and my bloods never reflect what is truly going on. Thankfully my rheumatology team don’t just go off the blood tests but also by examining my joints and doing ultrasound if required. It doesn’t sound like you had a thorough examination at all bless you. If it was me I would wait and see what the letter says and the changes he is advising and then ring back and have a chat about them. Did he give any suggestions for how best to treat your pain now? I would strongly recommend contacting the NRAS helpline for advice too as the wait and see approach not appropriate at all for you.

FawltyTowerz profile image
FawltyTowerz in reply to Summerrain14

He did say he is going to start reducing my dose of methotrexate. There was no examination at all just a cursory glance at my hand from 2m away. I think they are using the virus for not doing their job properly. He looked at my prescription and saw I was on naproxen and tramadol for pain and he is referring me back to the gp to treat me for fibromyalgia. Like you said Summerrain 14 I think I will see what he puts in his letter and then contact the gp for a discussion. I don’t think it’s any good trying to talk to him because I felt he was just not interested in my issues and was brushing me off. Thank you for your reply.

Summerrain14 profile image
Summerrain14 in reply to FawltyTowerz

Sounds like a good plan to speak to your GP. Are there other rheumatologists you can see at this hospital as the one you saw sounds awful! Just not acceptable at all. I was seen face to face last week by my rheumatology team and had a really thorough examination of all my joints and spent a good hour having a long chat with my rheumy nurse and steroid injection given and increased dose of MTX injections issued by the hospital pharmacist. I hope you can be seen by a different rheumatologist. You need a proper consultation and treatment for your psoriatic arthritis and fibromyalgia. Leaving you with active disease and pain is just not acceptable at all bless you. Do keep in touch with us won’t you? Gail x

FawltyTowerz profile image
FawltyTowerz in reply to Summerrain14

ThankYou Gail. Unfortunately I believe he’s the main consultant, he may have his minions but not seen anyone else. He also covers some of the hospitals in the area too. I will definitely voice my concerns with my GP when I can get an appointment. I will wait to see what he has written first. I’m glad you’ve got a good set up where you are, it makes all the difference. I will let you know when anything happens.

Niao profile image
Niao

Kind of the opposite of me! I got Fibromyalgia diagnosis 24 years ago, also Osteoarthritis, and spent last 2.5 years trying to get taken seriously when I knew it wasn't fibro. Just diagnosed with RD.It is completely possible that you also have fibro now but why on earth would they doubt that your original diagnosis was wrong!? Especially after taking so long to come up with it in the first place!

There are crossovers with many conditions and the many varied symptoms of fibro, but there are certainly markable differences too between that and psoriasis arthritis.

You're right, of course your inflammation markers could be low due to meds, this is why you take them!

FawltyTowerz profile image
FawltyTowerz in reply to Niao

I just wish I was back with my first consultant as they were brilliant, but we had to move away. I even had a specialist nurse looking after me. She was the one that noticed inflammation in my hands by feeling them (to look at them they look very similar to what they do now) and she put me onto methotrexate injections so I could have a bigger dose than tablets. I think when I’m due my next bloods I’m going to ask the gp if I should stop meds before hand. Thanks for your reply Niao, I hope your RD is now under control.

oldtimer profile image
oldtimer

Blood tests alone won't show whether you need to take the methotrexate or not. Examination, ultrasound and pain scores are also needed. Either there was a miscommunication or he's wrong. If he's seriously proposing this course of action I would be writing to him to propose the other parameters are checked. Get your GP on side with this by arranging a consultation with your GP in advance and express your serious worries about what is proposed.

FawltyTowerz profile image
FawltyTowerz in reply to oldtimer

Thanks oldtimer, I will get in touch with my GP.

helixhelix profile image
helixhelix

Again I echo oldtimer! I think you need to be proactive and write now. Once decisions are taken it will be much harder to undo them.

FawltyTowerz profile image
FawltyTowerz in reply to helixhelix

ThankYou helixhelix

happytulip profile image
happytulip

I have RD and systemic inflammation but my bloods never show inflammation because I have an abnormal cytokine response. So basically I can be inflamed all over and my bloods would still be normal.Drs have to treat me on my symptoms and disregard my bloods.

But it's proof that bloods can be normal yet inflammation is still present.

FawltyTowerz profile image
FawltyTowerz in reply to happytulip

Being relatively new to these issues there seems to be a minefield of information, and I must admit I don’t understand half of it. Perhaps I need to do some more research and definitely get my GP on board. Thanks happytulip

Lolabridge profile image
Lolabridge

Agree with all the above. Plus if you come off the drugs and start to flare badly you will probably need steroids. These are best avoided at the moment because of increased risk with Covid. You could just mention that in your letter to the consultant.

FawltyTowerz profile image
FawltyTowerz in reply to Lolabridge

Thanks Lolabridge, I will take that into account

DRunnerchick profile image
DRunnerchick

As Spock would say, “Illogical”. Your consultant is being illogical. I understand your story because I have been through it.

I was diagnosed with sero-negative RA in 2016. After 7 months of MTX they took me off due to oral ulcers (which I had in the year preceding dx). They “determined” (in there ever superior 🧠🧠) that it was due to side effects and I should go off the MTX and I didn’t have RA. I had a return visit to rheum 3 months later where they said it could be lupus or Behcets or🤷‍♀️. They discharged me from their clinic.

It is 4 years later, haven’t been back to rheum. RA is still on my chart so I asked about it since I’m having major pain in my hands (dx w/Dupuytren’s disease in Feb and probable erythromelalgia in October) but the last time I was in the GP clinic, I asked about it being on my chart and was told by the doctor I saw (a sports fellow, but not my GP) that it was “appropriate” given it’s sero-negative and it indicative of something inflammatory going on.

Now in between 2017 and 2020, I have had at least 3 occasions where a doctor tried to pin 📌 a fibromyalgia dx on me and fob me off to that or I just needed some mindfulness 🧘‍♀️ b.s.

I am not saying it is an invalid dx. I have an aunt who has fibro and has had to change her work because of it. But, if it is incorrect, there it is!! I find the dx is used as a more psychosomatic dx in 🇬🇧 and in other places by old school docs who graduated Med school pre-2010. They aren’t up on the research 🧐. It saves the healthcare system 💵💷💶 to get you out of the rheum service (back to GP mgmt, no pricey drugs, fewer appts w/ consultants) Stand your ground! Do your homework, strategize and act appropriately. I wish you all the best. Please keep us posted! 🍀🍀🌹😘

D🏃🏽‍♀️

P.S. I was just dx. w/ Stiff Person Syndrome. A 1: 1,000,000 persons prevalence disease. I still don’t know if I have RA. If I do, it remains untreated.

Niao profile image
Niao in reply to DRunnerchick

Unbelievable!!!

DRunnerchick profile image
DRunnerchick in reply to Niao

Nice Princess Bride reference! I just came across an ad for a book from Mayo Press called “Why We Revolt” supposedly about what has gone wrong in medicine and why patients seemingly have knee jerk reactions. I have not read the book. I have have a mixed bag of treatment from medical practitioners (I refuse to call some of them professionals). I have had some really exceptional care. I have had repeated care at that standard 💯% of dozens of times over 3 years from my Wizard neuro. I have had that standard 80% from my PCP office (I believe there is a management issue but since I tried to make a semi-urgent in-person appointment today and I’m still pushed out 5 weeks...). I have literally seen 10 specialties (?🤔) and the rest could go 50/50 between office staff, docs screwing something up, etc.

Like you said, “Unbelievable!”

Every patient for him/herself. Advocate! Be persistent! Take good notes 📝 and hold their feet to the fire 🔥!!!

Rant over (for now) D🏃🏽‍♀️

I say, why don’t we trade bodies for A YEAR! They keep our living situations etc so they play on the field we are on with the tools we are given. Then, we’ll see how they do and if things change.

Here is the link for that book 📖 if you want to read their take on it. I’m all for doctor/patient solidarity for change.

mcpress.mayoclinic.org/cate...

D🏃🏽‍♀️

Niao profile image
Niao in reply to DRunnerchick

Yes!

Having fibro has had a devastating affect on my life. Also the pain amplifying aspect of Fibro has made other conditions feel much much worse!

However, real as it is, you are not always/often taken seriously!

That is why I'd urge you not to let yourself be ignored!

In my quest to get my RA diagnosis, I had to fight against the ‘it is just the fibro'. Cannot tell you how much that word ‘just’ hurts/angers!

I was taken off the Rheumatology books straight after my fibro diagnosis years ago and had no follow ups. I've had to pay to go privately on 5 occasions. Do not allow this to happen to you!

FawltyTowerz profile image
FawltyTowerz in reply to Niao

Oh god Niao, that’s terrible. Since coming back from the hospital I’ve done some reading up about fibro and it sounds like it’s not taken seriously in so many cases and I can understand your frustration and anger at that comment. It is so bad that you’ve had to resort to private treatment. I will definitely keep fighting.

FawltyTowerz profile image
FawltyTowerz in reply to DRunnerchick

OMG you have gone through it. I agree with you that it’s partly probably a budgetary issue. As with the rest of the world the healthcare system is under a lot of pressure due to the pandemic and they are trying to reduce costs but that doesn’t help me or many other poor souls going through the same thing. Isn’t this what the NHS is here for? I will let you know what happens. Thanks

DRunnerchick profile image
DRunnerchick in reply to FawltyTowerz

FT,

I think 🤔 part of it is due to the ineffectiveness of medical education. We have both the old school doctors (some, a small percentage really) who have lost their curiosity and no longer see the patient as a human being deserving of compassionate care to the best of their ability. On the other end of the spectrum we have the newly minted doctors who (God bless their motives for going into medicine in the first place) practice by the algorithm in the EHR because they never really learned to look 👀 at the patient critically and seek out a humane answer. They could have graduated at the bottom of their class for all we know.

I know the majority, statistically fall in the middle and are doing a good job and want to help their patients. I know, from experience, a few doctors have found ways to “work the system” and find ways to get what needed to be done for myself or a loved one. They were conscious of cost but when it came right down to it, the patient came first. What they also had in common was curiosity and willingness to research. We all hope for the last category. We don’t want them to take the easy way. We want them to be right.

I think we have a bunch of HCP who are burnt out-nurses, MA’s, receptionists, doctors. The Pandemic 😷 has only shined the light on what was already there. They were unprepared. Medicine has been changing from a non-profit to a CEO-based top heavy business based structure over the last few decades. It’s a sickness unto itself.

D🏃🏽‍♀️

Sheila_G profile image
Sheila_G

I don't understand this. You need to discuss it with your GP and voice your concerns. Good luck.

FawltyTowerz profile image
FawltyTowerz in reply to Sheila_G

I will do Sheila_G, thank you

cakenomore profile image
cakenomore

I was diagnosed with PSA last year and on methotrexate and steroid injection with limited success at the moment. I was diagnosed with fibro last week. Only because I told my rheumy that I was feeling a crushing fatigue every time I tried to do anything above the norm. No pain just fatigue. She has written to my GP and told her to put me on amitriptyline and an antidepressant of her choice!!! No thank you. Luckily my GP is doing a whole barrage of blood tests first to check it's not something else like vit D deficiency or thyroid etc. I was ready for a fight but was delighted with the surprise that my new doctor has some sense. Don't give up, I know it's hard when you're in so much pain but if you can feel heard by some one it makes all the difference. I really hope you can find that person .

FawltyTowerz profile image
FawltyTowerz in reply to cakenomore

That’s promising cakenomore, I’m glad you’ve found a doctor willing to listen and take action. Unfortunately, having moved only last year I haven’t had much interaction with any GPs at the surgery so I will just have to pick one and see how it goes. I think my rheumy just latched onto the fact that my brother and dad both died this year, I was made redundant and I’m having to be support for my 82 year old mum. So all my physical pain is now “fibromyalgia” caused by stress. I don’t doubt that maybe I do have fibro on top of psa but the way he put it was almost saying I’ve been misdiagnosed with psa. Not saying a lot for his colleagues in the rheumatology world is it? I also had relatively small amounts of psoriasis (around my eyes and behind my ears) and this completely cleared when I started taking MTX, doesn’t this count for anything.? Like you I’m not at all keen to start on antidepressants, I already take enough meds as it is. Thank you for your reply

Niao profile image
Niao in reply to FawltyTowerz

I'm really sorry for your losses, that is awful! You certainly do not need all this additional stress, poor thing.

FawltyTowerz profile image
FawltyTowerz in reply to Niao

Thank you Niao x

Nuttyshirlz profile image
Nuttyshirlz

Hi I also have psa and Osteoarthritis and Fibro my bloods nearly always come up same has yours. I’ve seen 4 different rhemy drs and all said the same so when I move and go to see a different dr. I would question them if they tell me that you want a second opinion because other specialists can’t be wrong.

FawltyTowerz profile image
FawltyTowerz

Thank you Nuttyshirlz, I won’t let it go without a fight

Mickymoo profile image
Mickymoo

Hi there. Your rheumy should know that psoriatic arthritis doesnt show up on blood tests, like say, rheumatoid arthritis does. Very strange. I'd get a 2nd opinion. That is why PA is harder to diagnose as your inflammatory markers stay the same. It took 4 years to diagnose my psoriatic arthritis for this reason. X

Mickymoo profile image
Mickymoo in reply to Mickymoo

Also the pain from the arthritis has no baring on the amount of psoriasis you have. You could be covered in psoriasis and oniy have mild arthritis or maybe a small touch of psoriasis and debilitating arthritis. The 4 years it took for the rheumy to diagnose me properly , was 4 years of damage being uncontrolled with no medication. I was then put on methotrexate and the psoriasis completely cleared as did all my aches and pains. I was fobbed off for years. Unfortunately i had stopped the methotrexate as i was trying for a baby (which didnt happen), and now as i have heart and lung problems i can no longer go on methotrexate. Boo!! Cant have biologics either as not heart healthy, so trying a drug called ortezla now x

FawltyTowerz profile image
FawltyTowerz in reply to Mickymoo

It’s unbelievable in this day and age that diagnoses and treatment can’t be made quicker. I’m so sorry things didn’t turn out well for you and you now have heart and lung problems. I really hope the new drug ortezla helps you x

Niao profile image
Niao in reply to Mickymoo

That is dreadful!

Furmummy profile image
Furmummy

I was diagnosed with FM in Feb 2019 but I feel I was diagnosed incorrectly. I feel my symptoms are indicative to RA.

I don't think you should accept this just yet and ask for a 2nd opinion.

FawltyTowerz profile image
FawltyTowerz

Sounds like you have a fight on your hands too, Furmummy. It’s so sad that we have to waste precious time fighting the system, good luck if you are trying to get re assessed.

FawltyTowerz profile image
FawltyTowerz

Hi all, just thought I’d give you an update. Spoke to GP today, she was brilliant. We have agreed that I start on duloxetine for the fibro, to be honest I’m now in so much pain I will try anything. The consultant is going to see how I get on with that before attempting to adjust methotrexate. I feel so much better now that I’ve spoken to the GP. She has also given me a sick note so I can apply for ESA. What a relief 👍

Niao profile image
Niao in reply to FawltyTowerz

That's good news, really hope you get some relief.x

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