Was my fibromyalgia diagnosis too 'easy'?

[DandyLion]

In January this year, I began noticing aches and pains that I had not previously experienced. At first, I thought it was my bed or pillow, but the aches persisted over the following months and, knowing my own body, I knew that something was not right with me. Eventually, I did my own research and the symptoms I was experiencing were similar to those of hypothyroidism so I had a (due to Covid) telephone appointment with my dr, described my symptoms, and requested a blood test. The results of my blood test were all normal except for an elevated rheumatoid factor level of 38. My Dr then sent me a questionnaire to complete and referred me to a rheumatologist. A few weeks later my Dr called me and told me that based on my blood results and the answers to my questionnaire, the rheumatologist did not need to see me, and he diagnosed fibromyalgia. After hearing from so many others that it usually takes many tests and years to make a diagnosis, I am sceptical of the diagnosis I have received and don't think I've been investigated enough to rule out other conditions first. It was less than 2 months between initial consultation to diagnosis and in that time I have not seen any medical professional (except the nurse who took my bloods). To put into more perspective, it was only in June this year (after I had been complaining of my symptoms) that I learned of my family history of autoimmune diseases which, unbeknown to me, affect all the females on my mums side. My mum had fibro and suspected other conditions, one aunt has MS, my other aunt had lupus, my grandma had type 1 diabetes and hypothroidism, and my sister has been diagnosed with fibro and is currently under a rheumatologist being investigated for other conditions including MS.
I have concerns that my diagnosis was too easy and too quick, especially considering my family history, raised RF bloods and symptoms, and that I have not been investigated sufficiently to rule out anything else. I know it's difficult times to physically see health care professionals, but can any of you with more experience please offer some advice for me?

 

[sunkacola]

My take is that if you feel you need more tests, you should make sure you get them. FM is an umbrella diagnosis and some doctors don't believe it exists and others just jump to it without enough evidence. Just answers to a questionnaire are not sufficient to diagnose. Get the tests you think you should have, and best of luck to you! We are here to support you if it does turn out to be FM.

 

[DandyLion]

Thank you sunkacola, these are my thoughts too. I think I just accepted my diagnosis without a fuss as when my Dr called to tell me in August, I had just lost my mum suddenly and unexpectedly only 3 days previously. I was in shock at the time and unable to process what I was being told. It is only now, when I'm living with my constant discomfort every single day, having difficulty sleeping, scared that this could be how it is for me for the rest of my life, and feeling that medical investigation is now not an option due to a 'diagnosis' being made already, that I'm waking up to the fact that I really feel short changed by my Dr. I am only 44, but feel 74. I feel unable to do so many things I could have done only this time last year and I'm genuinely scared by this. I know we're in a pandemic, and I don't want to additionally burden the NHS at this time, especially when, whatever I'm going through isn't immediately life threatening, but I think I need to insist on further investigation of whatever condition I have otherwise, if it isn't FM, and is something else, surely it's now, at this early stage, where any medication will have the greatest effect? At first, through the shock and numbness of losing my mum, I think I was just grateful having a label and a Dr who believed in FM, but time has shown me that maybe I was too quick to accept this. Not sure now how to speak my Dr again?

 

[JayCS]

Hi Dandy - I'd suggest not to directly disagree with your GP, but instead to ask for autoimmune testing, considering your family history.
Also the elevated rheumatoid factor level still seems suspicious. I'd ask to go the rheum. 'just to be safe'... And getting your muscles & nerves checked by a neurologist plus hormones/thyroid like your first suspicion.

 

[DandyLion]

Thanks JayCS, that sounds like very sensible advice. I have very little experience of dealing with Dr's, so it is really good to know what I should be asking for. Much appreciated.

 

[JayCS]

Hehe, I've accumulated 40+ in the past year (& fared pretty well with most of them, at least they tried their little best) so I should know by now...

 

[DandyLion]

Wow, 40+ doctors? Out of interest, if you don't mind me asking, how long have you had symptoms for and have you now been diagnosed?

 

[JayCS]

No problem : The short answers are: Some kind of Ache about 8? years, first flares 2016, full flare since Aug19, first rheum. Oct19, diagnosed by 2nd rheum. Feb20. In case you have time for the longer story...:
Doctors that treat fibromyalgia or Frustrating Appt with Rheumatology (the text there which is blurred before you click on it)

 

[Creola17]

Thanks JayCS, that sounds like very sensible advice. I have very little experience of dealing with Dr's, so it is really good to know what I should be asking for. Much appreciated.

I just want to add that you should ALWAYS get a second opinion.

 

[TJB]

Hi Dandylion,
Just wondered how you are and if you have got anywhere further with Dr’s?
Im very surprised you were diagnosed with Fibromyalgia , without being seen, and especially with your inflammation blood result.
To be diagnosed with Fibromyalgia you would generally be checked for the main 18 ( I think it’s 18) pain points, though tbh most people can get more and different pain issues. This isn’t really a diagnosis that should be made without face to face in my humble opinion.
Is your inflammation marker blood test considered raised? If so Polymyalgia could of be considered and is treatable (and should be to prevent escalation). With an abnormal blood test I’m surprised FM was diagnosed without actually seeing a Rheumy as the results could well indicate other things and should be checked fully.
Is your pain point pain or more muscular?
With COVID-19 non urgent medical stuff is tough and you certainly best to keep away from hospitals wherever possible.
Maybe ince Covid is more under control you should ask your go for repeat bloods and if still abnormal and symptoms with you, request a new Rheumy referral..but face to face only.... even if you have to wait a bit longer.
These phone consultations are not ok in many patients situations.
x

 

[sunkacola]

To be diagnosed with Fibromyalgia you would generally be checked for the main 18 ( I think it’s 18) pain points, though tbh most people can get more and different pain issues. This isn’t really a diagnosis that should be made without face to face in my humble opinion.

Hi TJB, Just wanted to mention that many doctors are not doing that particular pain point test any longer for fibromyalgia diagnoses, because it has been proven to be unreliable.

I myself have been given that test three times, and twice did not respond to all of the points, only a few, and once felt so much pain with all of them that I almost screamed. For me, and for many others, how things affect the body varies greatly from day to day. One day I am pretty normal, the next day if I even bump lightly into something (anywhere on my body, forget the "pain points") I will gasp with intense pain.

These days, many doctors forego that test due to its unreliability, especially since it can cause intense pain to the patient.

Having said that, I do agree that a face to face doctor visit is preferable, although it may not be the wisest thing to do at this time. It depends on where you live whether it could be said that covid is more under control. It sure isn't where I live; numbers are still climbing in many areas.

 

[TJB]

I was diagnosed my some top Professor Neurologist. Im sure I didn’t have all the typical pain points and I certainly don’t now but a whole array of other areas and different type of pain. My gp wouldn’t know where to start and generally they don’t physically touch patients unless absolutely necessary.
My old gp was 1000 times better though both on FM and CFS/ME. Change of area so I lost out there.
From what I read it’s pot luck but a lot of dr’s are good with peeps like us suffering.
Wonder if would change their attitude if one of their family suffered with it
Ive learnt to pace,careful what eat, and a lot more...it’s not a remedy for sure!!

 

[CDHR]

GP suspected Fibro and did the pain point test. Yep, I winced, gasped out, and almost screamed out a couple of times. Was actually referred to rheumatologist by my mental health NP. Her mom has RA, etc. and could tell I was in pain at my appts with her. The Rheumatologist did a consult and gave me my diagnosis. He put me on a month of prednisone 10 mg and told me if it cures the symptoms immediately, its polymyalgia rheumatica. If it doesn't help, then its fibro and there's nothing he can do for me. I have an appt next Thurs. to see his NP. Took me 6 months to finally find a dr that would take my insurance. Now, he can't do anything for me cause I have fibromyalgia. Have a friend with RA that has been a guinea pig for over 20 years now. It took her over a year to get a dx of RA, and I only had a consult and got a dx. No MRI, CT, Pet scan, xrays, etc. Only blood work done was a CRP and Sed rate. CRP was high, but h said its due to obesity. DandyLion, I certainly feel your pain. I totally understand. I am not relieved to have a dx. I have no peace of mind. I'm just left shaking my head and wondering what to do next.

 

[sunkacola]

GP suspected Fibro and did the pain point test. Yep, I winced, gasped out, and almost screamed out a couple of times. Was actually referred to rheumatologist by my mental health NP. Her mom has RA, etc. and could tell I was in pain at my appts with her. The Rheumatologist did a consult and gave me my diagnosis. He put me on a month of prednisone 10 mg and told me if it cures the symptoms immediately, its polymyalgia rheumatica. If it doesn't help, then its fibro and there's nothing he can do for me. I have an appt next Thurs. to see his NP. Took me 6 months to finally find a dr that would take my insurance. Now, he can't do anything for me cause I have fibromyalgia. Have a friend with RA that has been a guinea pig for over 20 years now. It took her over a year to get a dx of RA, and I only had a consult and got a dx. No MRI, CT, Pet scan, xrays, etc. Only blood work done was a CRP and Sed rate. CRP was high, but h said its due to obesity. DandyLion, I certainly feel your pain. I totally understand. I am not relieved to have a dx. I have no peace of mind. I'm just left shaking my head and wondering what to do next.

Hi CDHR,
Welcome to the forum. We are all here to support you and to help.
A couple of things:
Prednisone is a steroid, and is to be avoided. It doesn't CURE anything, and that doctor who told you that was incredibly irresponsible in telling you that. All that steroids do is stimulate your adrenal gland which temporarily will make you feel better, but of course that doesn't last. So a person takes more, and the result is physical dependence, and a whole long list of dangerous side effects including mental problems and kidney failure. So I definitely advise staying away from those.

Also, stay away from an opiate medication (ask your doctor if it is an opiate before taking it), because those are very addictive and in the long run won't help.

I understand not knowing what to do next, and I made a post of suggestions for things you could do next. It is pinned at the top of the General forum, and I offer it to you to read and find things in there that will help you.

And.......count on us to be here to encourage you. You don't need to face this alone.

 

[CDHR]

Thanks Sunkacola. I will definitely look at your pinned post. My mother in law had RA and died from complications due to taking prednisone. They gave her a choice of quality or quantity of life. She chose quality and died sooner than she should have due to this choice. I am very new to all of this but I know what prednisone can do to you.
I am at a loss. I don't know of another rheumatologist that will accept my insurance in my area. My copay is $90 and this dr I am seeing just really brushed me off. So, I don't know what to do now. No real diagnosis, no help, either. Thankyou and I look forward to getting to know everyone here.