Right diagnosis?

[ritaskeeta]

I have been ill and in chronic pain( every day and during night) for nine years now, in that period of time i have been lucky to get a full week without pain/ fatigue/ flu like symptoms.

at the onset....it was mild pain all over body and feeling ill about every 4 or 5 months for roughly 1-3 week, but now it is continuous.

over the years i have been told it is ME with Fibromyalgia, but am now with a Rheumotolagist who is unsure to what it is as yet,

The pain is worse in my upper legs(muscles) feet and hands, both hip areas but can be all over the body as if the pain is flowing through my veins, sometimes my legs feel as if they are going to split open. it can also affect my head, and i experiance numbness down left leg/foot and arm as well.

if i have been sitting down it is then agony to stand....feeling as if my tendons and ligaments are too short for my legs if that makes sense, and my feey are agony to stand on.

As my consultant is baffled( all scans came back normal) apart from my blood tests show immflamatorys are consistantly high, he decided to try me on Methotrexate and Plaquenil,

unfortunately i have had to come off both after 3 months due to being taken into hospital with pain around the liver/gall bladder area,

I feel a bit fed up as really want a diagnosis....it was suggested it may be Psoriatic Arthritis but i have never suffered with Psoriasis??

However....7 or 8 years ago i was bitten extensively by a Feral cat, my lower leg was covered in puncture wounds and deep scratches, although it was cleaned up i was given no antibiotics! I do know if cat bites are left untreated, it can result in the immune system attacking itself, and cause extensive pain in the tendons surrounding joints, i am wondering if this is the key factor....or is it a Rheumatoid problem? just want to get this under control before it makes me a cripple.

[Hidden]

Hi - I feel for you - sounds awful. But of course no one here is equipped to tell you what is wrong - only specialist doctors can do that. That is a real shame that you weren't able to tolerate the disease modifying drugs because if they had helped you then that would have made diagnosis easier. On the plus side if they can't see any damage by x-ray yet then it could be something non degenerative - which doesn't help with the pain you are obviously in but at least it would put pay to the idea of becoming crippled. I have high inflammatory markers too despite not having much pain presently. It is obviously a sign that something inflammatory is going on which wouldn't tie in with Fibro or ME so much. Good luck to you and I really hope things improve for you soon. Tilda

[rattusrattus]

that sensation of tendons feeling like they are too short sounds so familiar, that's exactly how my heels and elbows feel.

i also get an awful feeling in the muscles on the tops of my thighs which feel like someone had put an electric whisk on them and its chewing up the muscles unrelentlessly.

i probably have psoriatic arthritis and fibro - ive have he skin disease most of my life, psoriasis usually effects the skin first but sometimes you can get the arthritis before the skin disease.

if you have any flakey patches or even a slight rash - that could be psoriasis too.

i hope you get a diagnosis soon because waiting can drive you round the bend.

[Victoria-NRAS Partner Moderator NRAS]

Hi ritaskeeta

Unfortunately RA and lots of similar conditions are not easy to diagnose and sometimes it takes time, additional tests, or presenting with other symptoms to get a diagnosis. Sounds like they are on the case though, and hopefully doing everything they can. As Tilda said, sometimes starting treatment for one condition can help with the diagnosis, but unfortunately these drugs can take up to 3 months to work, so you may not have been on them long enough to see if they helped. However, there are other DMARDs (disease modifying anti-rheumatic drugs) that they might be able to try you on.

Obviously if you feel they are at a loss or that things are not progressing you can always ask your GP to refer you to another rheumatologist for a 2nd opinion, but it might just be a difficult case that ill take a while to diagnose and get under control. Really hope you get your diagnosis soon.

Kind regards

Victoria

(NRAS Helpline)

[earthwitch]

I think you are lucky that a rheumatologist is considering something other than just fibromyalgia on its own. Too many people seem to be given that diagnosis without a full investigation into what else it might be. As has been said, many of the rheumatology disorders can be very difficult to diagnose properly, but once diagnosed they can be treated a lot better than treatment for fibromyalgia. It is a pity you couldn't tolerate the DMARDs because that could have helped diagnose. Stick with your rheumatologist, and hopefully they will find other ways to test you, and other treatments to try. Psoriatic arthritis doesn't have to have active psoriasis all the time, or even very big patches of it. I have heard of a lot of folk who get that diagnosis with only very small and unobtrusive psoriasis, or they might have had it many years ago before the arthritis started.. It might be good to ask the rheumatologist if you should see a dermatologist for a very thorough examination to see if there really is evidence of psoriasis as that would definitely help diagnosis. Tell the rheumatologist about the cat scratch injuries too - that might point to some more testing or a different diagnosis.

[ritaskeeta in reply to earthwitch]

Thanks Earthwitch,

I honestly thought it was Fibromyalgia to start with, but now it has got so bad and i have swollen areas around knees and around toe joints, i think maybe it is a form of Arthritis, i am positve in thinking the Rheumatologist will get this under control, but firstly i have to have my Liver and Gall bladder checked to see if there is an underlying cause for my liver function tests to have gone so high, tended to find the Plaquenil flared my IBS and stomach up, and the Metho used to give me flu like symptoms with extra muscle cramps the two days after taking it-

I have seen a dermatologist three year ago, no sign of Psoriasis, however...did have undiagnosed round patches of a very very red itchy areas on inside creases of elbows, down inside of calves only, no where else on body, that was 30 years ago, remember it well.....used to scratch it then cry as it was raw! dermatologist then, was unsure what it was, and never had it since.

really hope my liver will settle, so i can get back on my Metho, had only been on it approx 3 months, obviously a bit early to tell if it was working, but i think it was starting too, and by increasing the folic acid to once weekly to three weekly, that dose seemed to be avoiding the flu like bouts after taking my Metho.

not sure if i will risk the Plaquenil again though.

Off to see my Rheumy on Monday, so hope to have a plan B,

[Hidden]

I asked a question on here recently about Plaquenil v Quinoric having been switched to the latter by pharmacist because it's cheaper as generic. I have found that the IBS/ nausea I had with the Plaquenil has gone away completely with the Quinoric - perhaps because it's coated unlike the Plaquenil although both are Hydroxichloraquine Sulphate but different fillers and coatings can make quite a difference. Worth a try perhaps?

I have gallstones too and they haven't flared up since January and I've been on MTX for 9 months now. There are stomach protectors you can take with these drugs as well. Tilda x