Hi everyone - This is my first post and I’m looking to pick your brains please 😊
I’ve had a difficult last year, starting with variable unilateral ptosis of my right eye, double/blurred vision, minor weakness of arms and extreme fatigue. This started in February 2019 and I’m not really much further along in terms of diagnosis - all health professionals I have seen so far are convinced that my symptoms are due to Myasthenia Gravis, however, all my blood tests have been normal, hence, no diagnosis. I’m currently on Prednisolone and have experienced symptom relief. In addition, I started suffering terrible pains and stiffness in my fingers/hands and wrists in the April, and although I kept mentioning this to my Neuro, he didn’t really seem too interested as he didn’t feel it was MG related. So, after several months of pain, I went to GP in September and got a referral to a Rheumatologist. At my first appt, the consultant noted I was Hypermobile - never been told this before but at 37 years old, have always considered myself to be quite flexible. She felt that my joint pain (also have pains in both shoulders, elbows and feet, though to a lesser degree) were due to Hypermobility, but arranged an ultrasound of my hands to ‘rule out’ Inflammatory Arthritis. Results of ultrasound showed ‘severe-moderate thickening of synovial fluid’ and I received a letter stating this has ‘the appearance of Rheumatoid Arthritis’ and an appt was scheduled for me to be started on ‘anti-arthritic treatment’. I started on the steroids after my first appt and was on them when I had the ultrasound, and did notice that the pain reduced significantly at first, however, it wasn’t long before the pain started returning. So, i attended my Rheumatology appt today - I saw a different doctor which was frustrating, but he was very thorough and asked lots of questions and examined me carefully. However, by the end, he said he didn’t feel that I did have RA but said it was clear something was going on. He mentioned Fibromyalgia, even though he checked all the ‘tender points’ and I had none, and when I asked (already knowing the answer) whether fibromyalgia can cause the synovial thickening, he said no... so not sure why he even mentioned this in the first place. Anyway, he basically said he’d treat me for inflammatory arthritis and see how I get on, which although frustrating to not have a diagnosis, I was grateful he agreed to treatment. This bit I found strange, though - he gave the CHOICE of treatment, rather than recommending one... he printed off leaflets for Sulfasalazine, Methotrexate, and Hydro.. something or other, told me to read through them and decide which one I wanted to try!! I found this very weird, but settled on Sulfasalazine. Since coming home, I’ve consulted Dr Google but can’t really find anything else that causes the synovial thickening apart from RA?!?! So am therefore not sure why the doc didn’t think it was this? Sorry for long post - I didn’t intend it to be this long, but it’s quite satisfying to get everything written down! And so I’m wondering whether any of you lovely people out there have any knowledge or experience of what else may be causing my joint pain and stiffness, with severe-moderate synovial thickening clearly evident in the ultrasound? All my bloods are within normal limits - ANA, DNA, RF, CRP and ESR. Thank you for reading 😊
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Really funny. Your story is almost identical to my pre symptoms and tries to find help from professionals to find help who in fact did not have enough knowledge to understand. It has taken a very long time to find enough knowledge to understand my individual situation and find ways to help.Back to your question.
Synovial changes occur when your body cannot fix a situation, which causes an ongoing inflammation. Your body wants to compensate as best it can. When it can’t new symptoms appear this in my view is a cry of help from the immune system,not an attack.
I did not choose the meds and instead tried to find help. A very hard process with a lot of trial and error as well as pain. But finally I have found to help my individual needs and see that it’s helping to regain my health.
As an example I gave up. antiinflatorie medications and started with LDN (helped enough with pain).Then I went on to study very closely what other symptoms and tried to find answers like fatigue.How it was connected with my metabolism and so on. And especially how it was connected to me as an individual and my RA.
Hello... I also went through the ‘is it isn’t it’ stage, they told me I had palindromic arthritis, mainly because my bloods were not sero positive. I guess that RA symptoms may be present in some circumstances and then recede again. It’s frustrating especially when the patient pathway suggests hitting it hard within 12 weeks.
I started on sulfasalazine and still take it with a biologic. I never had side effects and I know it works because I get pain if I run out! Best of luck xx
Hi SB, it’s not always easy to diagnose autoimmune diseases, especially when we don’t show the antibodies in our blood tests. I am negative for the antibodies for MG but I had a positive nerve test and I am negative for the antibodies for RA but scans show inflammation. Unfortunately, it’s tricky when you don’t fit neatly in the diagnostic boxes.
I had an ultrasound scan a few months ago and the radiologist/radiographer (I’m so bad, I never know the difference!) was an expert in this field. He said synovitis is from inflammatory arthritis, although sometimes he cannot always tell if it’s thickened from previous inflammation or current inflammation.
As your rheum as prescribed meds, I’m going to assume he does believe there’s an element of inflammatory arthritis but also, perhaps he feels fibromyalgia may be playing a role. It’s not uncommon to have both conditions.
Thank you crashdoll. My nerve test was negative - the only ‘positive’ tests I had for OMG were those carried out by the optometrist I.e. Cogan’s lid twitch, Ice pack test, etc. It is tricky as you say - part of me is obviously pleased that all these tests are negative, but another part of me is desperate for something to be positive, as I suppose it will help me to feel validated... I think that’s why I was disappointed that the doc I saw this week seemed to almost backtrack a bit from what the previous doc had said in her letter to me. But, as I said, I am pleased of course that he recognised something was going on and is treating me 😊 x
I have both RA and Fibro and I know fibro causes pain, but the RA causes the inflammation. My bloods never ever show I have inflammation but I can be in a lot of pain.xxxx
The thing to understand is that he DID make a diagnosis - inflammatory arthritis. RA is a type of inflammatory arthritis. So he has confirmed that you have inflammatory arthritis, but he isn't sure it's definately RA.
There are many types of inflammatory arthritis, RA, Psoriatic arthritis and ankylosing spondylitis are the most common ones, but you may fall somewhere in between those diagnoses, OR, as is often the case, it takes time for inflammatory arthritis to differentiate into one of the main subtypes.
The main point is though, you DO have a diagnosis - inflammatory arthritis. He is treating you for it, so things are going down the right path. It may be RA, but it is definately inflammatory arthritis (in his opinion). Certainly the synovial thickening would point to RA, but there will be more going on in your labs, scans, etc, that leaves your rheum not completely sure that its RA. Over time, it will be come clear. Hopefully the sufla helps you. Wishing you the best
Hi lilyak- thank you! This actually does help me to put things in to perspective! The doc has referred me for an MRI of lower spine as I have terrible problems with my back and he mentioned ankylosing spondylitis, though I had forgotten until I read your message 🤪 I was too focussed on the RA and getting a diagnosis as it is frustrating sometimes. But again, thank you for your message, it really has been helpful 😊
There is so much being thrown at you in the beginning, at diagnosis. Hang in there. Your rheum will sort it out. In the meantime he is treating the disease. Thanks for your reply. Take care xx
Your story is so very interesting, I’m hypermobile as well as have RA and fibromyalgia. I got lucky, if there is such a thing, and saw a rheumatologist after hurting my back as I wasn’t getting any better (and was having these odd achy pains in my body.) But I mostly went to him to rule out RA as my mom had it. The cranky old coot knew his stuff though and diagnosed me with RA very quickly, even when I doubted and denied it. The puzzle of my unexplained joint “injuries” over the years finally made some sense after a bit. Ok, I have RA.
Fast forward 7-8years, my daughter starts complaining terribly of joint pain, similar to my complaints at her age. Our primary doctor ran the blood—no inflammatory markers (which I don’t have either). A year goes by and she’s worse, so I insist on a rheumatology referral. He diagnosed her with EDS-ht (hypermobility and POTS)—I dug into everything I could read and that’s when I realized I definitely have this. interestingly, it was my daughter’s diagnosis of EDS-ht that made me aware of having that condition. My rheumy missed that one. Anyway, fibromyalgia often accompanies hypermobility; and obviously RA too.
In all the reading I’ve done on hypermobility, And I’ve read extensively, I’ve never seen mention of synovial thickening from it, so I do not believe hypermobility causes that. I’m also unaware of any condition of their than inflammatory arthritis that does. I’ve looked specifically for the connection between hypermobility and synovial thickening , but never have found it to be the associated.
What I’ve also been curious about is whether hypermobility puts us at higher risk for inflammatory arthritis... my daughter’s NP made a comment that alluded to this evolution of the condition being a possibility, but I’ve not seen it in any of the literature I’ve read on hypermobility. So your case, coupled with mine, intrigued me. Furthermore, my daughter has intermittent symptoms consistent with mine early in my inflammatory disease. Those insidious matching Joint pains that make no sense, trunk rash, extreme fatigue, skin tenderness, dry and cracking skin, Things found with inflammatory disease, she has suffered intermittently for most of her life. As had i.
Anyway, this was a long blathering post, and I apologize! I’m so curious about parallels we may share as I see so many with my daughter, and suspect she too has an inflammatory condition that’s lurking and undetected.
Welcome to the community, I’ve been lurking here for a long while, but only recently started engaging. RA has brought us together, and it indeed nice to have a place of understanding and support.
Thank you for sharing this Justanothermama 😊 interestingly, after my first doc mentioned the hypermobility, I did start reading up on it and came across EDS and found many of the symptoms were things I have experienced and started to believe I may have it, and was gearing up for a conversation with my Rheumy. However, when I got the letter suggesting RA, those thoughts went straight out the window, and I forgot to mention it to the doc I saw on Monday. I’m very interested in your thoughts around the links between Hypermobility and inflammatory arthritis so will do a little reading myself 😊 I hope you and your daughter get some more answers soon xx
It’s certainly possible that you are hypermobile and developed RA. They aren’t mutually exclusive—as there is no question I am both. But It does sound as though you have inflammatory arthritis of some sort. which is why your post piqued my interest—having both.
My mobility has changed after 13 years of RA, but I still pop out at the hips and am hypermobile. I can also still do praying hands behind my back and am “double jointed” in my thumbs—despite the RA, the flexibility does seem contrary to RA, as it makes things stiff and achy but it certainly doesn’t fix a collagen disorder. Both conditions cause pain, and can lead to brain fog and fatigue, but as far as I’m aware, the synovial lining thickening is inflammatory autoimmune.
So in a nutshell, don’t disregard either diagnosis. It’s likely both are legitimate. Treatment for hypermobility is generally limited to NSAIDs, which you’ll likely be taking with RA as well. Best of luck with your RA treatment. I wish you the very best luck!
It is confusing to have hypermobility and RA, because my understanding is that RA causes the opposite which is dreadful stiffness and lack of mobility. That is possibly why they are confused in your case.
Anyway, regarding the synovial thickening, this was found on the ultrasound of my hands in numerous places and nine months later was confirmed by MRI.
At first the consultant told me that synovial thickening was not inflammatory arthritis. He seemed to have done a bit of research or afterthought on it because over nine months later and 15 months after onset, he decided that synovial thickening was caused by RA because it was found on the MRI!
I did quite a bit of research on it, which confirmed that RA does cause synovial thickening and it comes on when RA is either chronic/longstandig or sudden and severe.
The ultrasound, and MRI which mirrored it, also found increased vascularity. This is when RA lays down blood vessels in the synovium and presumably helps cause the thickening.
Historically, mine came on suddenly (overnight) in my hands but progressed as you describe with new features every few days, moving from one hand to both, to the wrists, forearms, elbows, upper arms, shoulders, slightly to one lower numb leg, foot arches, knees, some toes. It is a peculiar pain - I get a sudden crack of it which has made me scream, severe piercing and stabbing but it only lasts a matter of seconds or goes on/off for a matter of minutes. The worst thing I found is the disability which thankfully is 90% relieved, though it was 100% relieved in nearly all but my hands. In terms of flexibility, I have always felt like the stiffest person in the world so I don't know if it was lurking there all the time but I am assured it was not. My niece got severe pains in her hands and saw a rheumatologist who said her hands were so marvellously flexible that she could not possibly have RA and the pain related to an accident with a glass door when she was 15. I used to have wonderfully nimble, slender piano fingers but my hands are swollen at best now. Luckly, I can now use them but I could not for a long time.
Ask for a copy of the ultrasound so you can see the report and the film. It is very interesting and will report everything found - in my case, explaining different nodules (one a piece of popped tendon) of different causes, also exactly where the thickening is - usually the middle finger joints and knuckles, erosions etc. I would have to look it up to remember all the terms. It will give you a better idea.
Incidentally, don't mean to go on, but I find anti histamines relieve the swelling, pain and disability in my hands significantly.
I noticed it coincidentally when I took Loratadine for hay fever (tree pollen), so when my hands were really bad I took more = three per day. I mentioned this to the GP and she did not feel it safe to take three Loratadine per day. In spite of being a new style anti histamine, it still caused drowsiness. She then prescribed Fenofexadine which does not make you drowsy and one per day for my hands is fine, which she said is a safe dose.
I notice now on the internet that Fenofexadine does not work properly if you eat grapefruit and I have eaten it virtually every day for 30/40 years, so I am going to try it without to see if it is any better. Also, you are not supposed to drink alcohol - that would be a big problem for me, albeit certain alcohol (beer, flat white wine) does make my hands worse.
Fenofexadine is only available on prescription and my current GP was reluctant to prescribe it, saying there was no medical reason. My previous GP has left. I suppose the issues with alcohol which may affect the liver are the reason. However, I have been attending a chest clinic, and they have said I should take Fenofexadine every day all year round. Don't think I will manage it though given the alcohol issue.
I'm not sure if Benadryl will work but you could try. One big benefit of Benadryl is that it is so fast. I am allergic to numerous substances including steroids and had a nasty reaction to an inhaler, with water pouring out of my nose on to the floor, and I took Benadryl which stopped it immediately.
Anyway, a lot of research is now being done into the connection of histamine with RA.
Wow! Interesting! I take loratadine daily for seasonal allergies but will have to pay attention to my symptoms relative to it. In the winter I usually take a break from it as it is winter... my symptoms are also worse in winter. Is it the weather or absence of loratadine??? I’ll resume the loratadine and see if I feel better! Thx for the info! It’s incredibly fascinating.
I would think by which joints are affected & symmetry. OA tends to be limited (!) to the neck & lower (or lumbar region) back, both of which I have (cervical & lumbar spondylosis) as well as the hips & fingers (DIP joints)/hands, again which I have. As you know RD is usually the toes, ankles, knees, fingers (PIP, MCP & CMC joints), knees & shoulders. An experienced radiographer will be able to determine between the two as well where both are afflicted I guess.
That makes sense, thanks nomoreheels . I had a very experienced radiographer do an ultrasound scan last year and he was talking to me about synovitis. He did mention it can be challenging to identify the difference between where there was synovitis and where there is current synovitis, especially if there is non specific thickening. Hope this makes sense? Mine was in the small joints in my feet, so assume it was likely to be RA in my feet rather than OA.
This is an important point to make.I had OA after falling from a horse gradually In a few years. Then different situations in my body could no longer be fixed by my immune system and RA broke out.
Jumping in to say yes it is frustrating not to have a definitive diagnosis but that yes a diagnosis of inflammatory arthritis (of some kind) plus finding what meds work for you is what I would focus on. It is easy to get hung up on names and I think often the boundaries between diseases/conditions are not clear cut. I ended up being listed/noted as having rheumatoid arthritis for the purposes of being put on a biologic, but have been told I have an inflammatory arthritis related to my ulcerative colitis (most likely). When it comes down to it they were just glad to find a medication that worked, as I had gradually made my way through Sulfasalazine, plaquenil (hydroxychloroquine), prednisolone infusions, and methotrexate over the space of a year. Nothing did any good (the infusions worked for a few days only) until I was put on humira, which worked brilliantly. I do still take methotrexate because apparently they work together, but mtx on its own did nothing for me. By the time I found the magic bulletin I was very very ill. I think my rheumy was very relieved - he confessed later on that he’d been getting rather concerned.
Good luck with the search - hope you find your own magic bullet - the joint pain is difficult for anyone who hasn’t suffered from it to truly understand.
I find they are not very helpful when you say something does not work or you have an adverse reaction, implying that can't be true. It seems to me that they do not want to progress beyond methotrexate - the attitude is either take it or put up with the condition.
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which is why your post piqued my interest—having both. 
I really need some help please...
RA, PSA, lupus or what?!
Rheumatology today 
What can I hope for?
Sulfasalazine questions :)
