RA and Fibromyalgia

[Alicepirate]

I have been told I have RA maybe 4 years ago now but it has just got gradually worse with some better periods. No meds have worked for me the better periods were when off any drugs but have had worse times when off drugs too.

I am wondering if i could have fibromyalgia as well or instead of I don't have a high rheumatoid factor my Anti CCP is about 35 now ( I think those are the correct names) . On the tacrolimus that I am on for the RA my blood have got worse re inflammation and my CRP is now 35 it normally hovers around 3-5 even when I am visibly swollen. I presently have worst flare ive ever had and it's gone on nearly a month .

I am wondering if anyone else has had this situation that no RA meds seem to work have been through some biologics, methotrexate, hydroxychloroquine, leflunomide, sulfasalazine, steroids which to start did work then didn't now on tacrolimus. Just wondering if I had fibro as well or is that was the thing causing the pain could this stop meds from working.

I am finding it impossible to get rheumy appointment spoke to rheumy nurse this morning but my consultant away so will be a wait for the nurse to ring back but she is just gonna add in a new med she thinks no appointment still i am trying to argue for a face to face but then but i suppose whatever the circumstance they just give you medication til it works so. Face to face appointment it seems are just to qualify for the funding for the meds maybe ?

I understand massive NHS issues with appointment and rheumatology and no one can give me exact diagnosis of course on regarding me , but just wondering if anyone has had a similar situation.

[Deeb1764]

I was diagnosed 3years ago with RA then last year got diagnosed with Fibromyalgia. The pain is different in some ways as more muscular than joint BUT it can feel there are trigger points and you can find these online and you will know ie if you touch them right if it is a strong possibility.

A GP can do fibromyalgia not a rheumatologist as per my letter from mine today stating clearly no longer interested see your GP

I also have other autoimmune ie sojerns and reynauds as they like to have friends.

I will inbox you some info. Fibro for me is also weather based rain and windy and it’s a bad day. Also lots of pain in the neck and pain which is not traditionally RA.

[Alicepirate in reply to Deeb1764]

Thankyou Dee , really kind of you loads of rain at the moment too 😳

[Luludean]

ho alicepirate , I’ve had exactly same experience . Getting no where , being prescribed all these high impact drug over the phone without being seen . Been really ill on biologics , prescribed sulphasalazine which would have had bad interaction with my heart drugs . The pharmacist noticed this . I’ve lost trust in the department , not been SEEN for 3 years.

[tyncwmmarchhywel in reply to Luludean]

I just can not believe that you have not been seen at rheumatology in all that time,I have never gone that long . Good luck.

[Alicepirate in reply to Luludean]

really sorry to hear of your situation I do try to be ‘positive ‘ the NHS just seems v broken people working there of course trying their very best . but I just remember taking people to hospital like 15-20 years ago when people were sent to different departments and would get scans and results same day . Now in my experience seems to be a one size fits all they start with the cheapest and go up to the most expensive drugs and they don’t take a lot of notice or maybe don’t have access to other medical history. I have really bad digestive issues and keep being give oral drugs I’m trying to be positive but feel awful on the tacrolimus and my joint worst they’ve been .

Sorry big old moan there .

So sorry to hear of your situation of 3 years no face to face ❤️ So very hard for you

[Jetxav]

Well most of this sounds like my experience in the years of being diagnosed with Rheumatoid Arthritis and receiving biologics, steroids, methotrexates, Mycophenolate etc. etc. All with no affect. The sulphazalasine (maybe spelt incorrectly) gave me dreadful tummy pain and I felt quite unwell. I do suffer terribly with gastric problems and been fobbed off for years with the 'IBS' theory, which to this day I totally disagree with, as I display the exact same symptoms as my Late Mother (we will not go down that route at the moment). Anyway during a more recent face to face appointment with a rheumatologist I explained I appeared to have pains everywhere and was informed that it often happens that the Rheumatoid dies down for a while and Fibromyalgia takes over! This was new to me and I do have a problem believing that. She also said that the Rheumatoid can flare up again at any time after things like flu or a virus. I however, was quickly removed from her list and now await Physiotherapy etc. that she has recommended. Has this happened to anybody else?

[Alicepirate in reply to Jetxav]

really sorry to hear about you situation Thankyou for sharing it with me .

Hope you get some physio soon at least. It just seems so difficult with RA as we all have such different experience of symptoms and different life histories and the amount of time for treatment and assessment so short it must be very frustrating for the Dr also , the digestive issues are so hard to manage during a flare I really feel for you. Do you mean you have been removed from rheumatologist lists ?

[oldtimer2]

For many years I felt that the rheumatology department were just trying to get rid of me. My inflammatory blood test results were never more than slightly raised. My photographs of my swollen red joints were ignored. I had actually been advised at one point to stop all medication - then had a major flare, went back on DMARDs, but was then regarded, I felt, as a nuisance making a lot of fuss about little.

Then suddenly one of the specialist nurses actually properly looked at my hands - I'm now on adalumimab and just so much better!

[Alicepirate in reply to oldtimer2]

my inflammatory marker have never been high til I started on the tacrolimus but like you get very obviously swollen joints with no markers showing in my blood. It’s really hard isn’t it then as doing the blood tests with bad joints it’s not flagged I think and the depart often thinks you are ok but ...

Thankyou for sharing your story glad to hear the adalumimab is helping .

[Omzeiler]

I was diagnosed with RA in June 2014 and was prescribed Methotrexate, Hydroxychloroquine, sulfasalazine and Prednisone. Fortunately, I responded very well to these medications. Prednisone was discontinued after 12 months and Sulfasalazine was discontinued after 4 years. Unfortunately, all RA meds were discontinued in January 2022 as I was diagnosed with Diffused Large B-Cell Lymphoma, apparently due to prolonged use of Methotrexate. Currently, undergoing Chemotherapy for Lymphoma only. Hope you get proper diagnosis soonest and find some relief!

[Alicepirate in reply to Omzeiler]

Thankyou for sharing your story hope the chemo is helping and you are getting plenty of support at the moment. Very difficult hope you are ok ❤️

Making decisions about medication is so hard I really feel for.

[Indersisive71]

I was diagnosedwith RA two years ago ,some days are better than others. I am on on sulfasalazine and hydroxychloroquene .l found out from my blood tests my iron is down i am wondering is this due to the medications hope you get sorted soon

[Alicepirate in reply to Indersisive71]

I also read today 80% of RA people have low iron . I wonder why that is is it just the drugs or the inflammation and RA that causes it .

[Alicepirate]

hope your drugs are helping and you can get your iron up ok and not your feeling to rubbish with it. Thankyou for sharing medication is so difficult.

[Angels54]

Hi, I’m also having problems , Ihave gone a month with agonising pain just told to take painkillers, eventually spoke to nurse who said she would book me in for steroid in next week, advised I couldn’t go another weekend like this managed to fit me in for injection next day but had to travel 70 mile in total agony , slight difference need to in today if this doesn’t work don’t know what I will do 🤦‍♀️

[Alicepirate in reply to Angels54]

really feel for you I feel very similarly the everyday becomes almost impossible doesn’t it . I can no longer get in my bath so having to use others peoples showers as I only have a bath ☹️ Just those little things like not being able to get dressed normal either just restricted to wearing baggy sack clothing all becomes so hard I just desperate to be able to brush my hair and feel a bit more normal but like you the waiting is stressful .

Just so hard I really feel for you really hope Your steroid gives you some relief keep in touch 💗