fibromyalgia?

[Tired-fed-up]

saw my rheumy today. CRP is low, no visible or palpable inflammation, but I still have constant aches, fatigue, low mood and brain fog. So today we discussed probable fibromyalgia. I don’t know what to think about that - it feels like a cop out?! Please tell me your stories, good and bad, about fibro ☹️

[FarhanaM]

Hi there,Its quite possible that you have fybromyalgia as a secondary issue.

I have had a inflammatory condition called Reactive Arthiritis for 6 months+, After sulfasalazine didnt work i felt, I requested another round of steroids, as previously it knocked out all the pain and inflammation. However i was still in agonising pain, so started methotrexate, my Rheumatologist thought i may have developed fibromyalgia too, since no visible swelling, but I was very dismissive to start with, as I was convinced its the arthiritis spreading.

However after the first 10mg tablet of amitriptyline, next day i felt an immediate response to the pain around my ribcage and legs. As i increased over the weeks to 15mg, again i felt further relief. Based on this I believe if you suffer from intense pain for a while, you do get yourself worked up and can develop fibro. Please try amitriptyline, it had zero side effects for me.

Update how you get on

[SlothSandpit in reply to FarhanaM]

I would second that - I started Amitriptyline for chronic pain alongside my arthritis in January and it's definitely helped.

[puffyface in reply to FarhanaM]

Good advice. I have some sort of autoimmune overlap (lupus/Sjögrens)…but rheumatologist says that the pain (I feel like my body has been in a car crusher in the morning….and often intense leg and shoulder aches/pain in the evening) is likely to be fibromyalgia. I didn’t get on well with methotrexate….and don’t want to try any other dmard for now, but will continue taking hydroxy as I have for years. Amatrip has helped so much. Initially, it made me very tired and foggy the next day…even on 10mg. Now I take 10 or 20….or none each day, depending on pain…and it’s great for me. Perhaps ask to try it? I think it is supposed to help with mood too. Good luck 😊

[Hidden in reply to FarhanaM]

It really helped me with pain. I take 20mg before 7pm. Sleep loads better too. That's for my Fibromyalgia.

Am on Methotrexate and Sulfasalazine for my RA. No painkillers ever worked, and I was on Diclofenac & Naproxen for years…

[Seatgeorge]

My friend has that it's extremely difficult to diagnose, he's on steroids but does suffer back pain, hope it improves for you.

[Tired-fed-up]

haha! That made me chuckle!

[Deeb1764]

I have sero positive RA and a few other friends but then things were not settling down and got a different kind of pain and eventually had a diagnosis of Fibro as well. Very good book online by Dr Leon Chaitow helps understand Fibro vs RA etc Fibromyalgia & Muscle Pain which helped a lot when first told this as like you was a tad fed up!

[cyberbarn]

Fibro does have a specific criteria and many clinicians are lazy and don't follow it. Have a read of this:

rcplondon.ac.uk/guidelines-...

Note that there are psychological symptoms as well as physical ones.

My first rheumy barely examined me and tried to fob me off with fibro. I knew that not only did he not examine me or ask questions according to any criteria, I also new that I didn't meet the criteria. It took a formal complaint against him for him to say sorry, you are right, I might have missed something, please have a second opinion.

The second opinion was psoriatic arthritis.

So if you don't think you have it, stand up for yourself and question their diagnoses. Because once you do have that diagnosis it can be hard to get clinicians to see beyond it to other things that might be going on.

[Tired-fed-up in reply to cyberbarn]

thanks. She did use these criteria, and examine me. But she said it’s important to ensure my RA is controlled before taking it further, so she gave me a steroid injection in my shoulder that has been in pain for years. I go back in 6m so I’ll try to keep a pain log during that time. I forget everything otherwise! 😕

[marie66]

Hi, I have RA and after a year, was diagnosed with secondary Fibro alongside the RA. It seems to go with it sometimes kind of a double whammy! M x

[Sunshinereturns]

I have RA along with pallendromic rheumatism. I felt devastated to have an additional diagnosis but knowing has made things so much easier. I hope it turns out like this for you.

[Tired-fed-up in reply to Sunshinereturns]

thanks! I was starting to think I had adhd with the lack of concentration, rubbish memory, and depression.

[Sunshinereturns in reply to Tired-fed-up]

I think with everything it is so much harder to cope when you don’t know what’s going on. The treatment for pallendromic rheumatism is the same meds as RA and I wonder if it’s the same for fibromyalgia? I just needed higher doses. And also helped when my symptoms didn’t make sense. I hope you get answers soon.

[smilelines]

my rhuemotologist says once my psoriatic arthritis is under control we will look at the fibromyalgia as it might improve at the same time. From what I have read fibromyalsia comes after you have a prolonged painful illness for at least two weeks. 🤷‍♀️

[MW07]

Hello

I have just joined, am looking for information about fatigue, and your post caught my eye. I have similar symptoms.

I have had RA since 2007 and currently am on Etanercept. My inflammation levels are currently low, no joint issues, however, I have been having really severe fatigue - do you or anyone else have the following fatigue symptoms (I will discuss these with my RA doctor next week):

-Persistent / recurring sore throat, often with sore glands

-Overwhelming physical and mental fatigue - including: -Brain fog - loss of normal concentration, etc; -Inability to deal with normal things, e.g. overwhelmed in shops, unable to go shopping, easily emotionally overwhelmed, etc

-Body / muscle aches - various (not RA joint pain)

-Pins and needles / tingling / chills creeping intermittently over body

-Occasional abdominal pain and constipation

-Occasional urinary tract problems

-Depression (after the persistence of fatigue - NOT to start with)

-Sleep disturbance and unrefreshing sleep

-Poor appetite

-Post-exertional malaise

-Getting through work but too exhausted outside of work to do anything - significant reduction in other activities, e.g. social / family

-Dizziness upon standing up, sometimes dizziness while standing / walking

I would be really interested to know if others with RA have had similar experiences.

Thank you.

[Tired-fed-up in reply to MW07]

it’s so hard to unpick what causes what isn’t it? I’ve had depression for years (work and health related), left work 18m ago due to stress / burnout / mental breakdown. Since then my physical health has improved a lot ( also coincides with Amgevita kicking in) but I still struggle with overwhelm (like you described), bouts of depression, severe fatigue, muscle pain, poor sleep, lack of focus, poor memory. I’ve also had digestive problems for years. Rheumy thinks it’s fibro, mental health team thinks it’s depression and I think if I could just reset my brain and sort out my sleep and diet then maybe I’d be fine!

[MW07 in reply to Tired-fed-up]

Hi, thank you for replying so quickly. Yes, it is really hard to unpick causes, and the health professionals I've spoken to so far can't unpick either. There seems to be a tendency, however, to pin the blame on mental health, which I find very frustrating. I felt very positive until I had a fatigue crash about 3 months ago (following a run of viruses and a lot of work stress).

It is really interesting for me that you have many of the symptoms I have. Giving up work seems to have been a good move for you, which I will bear in mind, although it is not the only answer, as you have outlined.

Sorting out your sleep is not easy and in my recent experience, even a good sleep does not necessarily rule out fatigue. Sometimes I sleep well but wake up feeling like I have not slept at all.

Will be discussing all of this with my consultant next week. Thank you for your feedback. Our experiences sound similar.

[Jackie1947]

Don't think it as a cop out . Fibromyalgia lots of people have it. I have it secondary to RA . It's not bothersome for me but some people it is. Read up about it