Seronegative arthritis?

magenta

Hello,
Not been posting very much lately. Still bit down about last weeks rhuemy appt. and have been trying to just get on with things. Even started thinking, it can't be arthritis then, no dr seems to take much time with me and just say I'm unusual. Anyway, today I woke up to every joint in my body (well, it feels like that :? ) being very sore. Feet, hands and elbows feel they are twice the size. Every bone in hands, wrists and feet are painful. Tried to go for a sleep today and couldn't get comfy. I like to lie in foetal position but can't do that anymore cos when I bend my arms my hands go numb and I get pins and needles in hands. Lying on my left side today, arms straight and hands flat-still getting pain/numbness and pins and needles in hands. Now can only lie on right side, in a most uncomfortable position :shock: My jaw has flared up again even though I'm wearing my splint at night. I'm at a loss to know what's going on with me. Does anyone else with seronegative arthritis feel like this? Does your esr and crp come back normal? Thanks,
Magenta x

magenta

Hiya Scottishlass,
I managed a sneaky peek at results and I think CRP was 1.4!!!! I know that's nothing :shock: I just want to know what's causing me all this pain and inflammation.
Magenta x

frogmorton

Hi Magenta
I still don't understand why they don't put you on DMARDs even if it is sero-neg
You are really suffering far to much for this to go on
Is it time to see a different rheumy?
Take care
toni x

colinb

I kinda agree with Toni here, Magenta...i think it time to get second opinion from different rheumy

lindah

Hi,
easier said than done I know but you must try not to let the doom and gloom in. Theres nothing worse than the feeling that the medicos dont understand or believe you but you have all of us fighting your corner.
The few weeks I have been reading these posts have been a great help and you yourself have been there for others.
The OA gave me soft splints to sleep in to help my carpal tunnel symptoms and I found they stopped the numbness in my hands .

lindalegs

So sorry you're having such a rotten time of it at the moment, Eileen.

When my arthritis was very active, in the beginning, I had hand splints made for me, although mine weren't soft they were hard. The 'beauty' (they're not beautiful at all :roll: ) of them is they put you hands and wrisits into a comfortable resting position and enable you to sleep more easy. They do take a couple of nights to get used to them but they have to be better than the pins and needles and pain you're suffering now. You need a referral to an OT but at least if you can get this in motion you'll get a little light at the end of the tunnel.

I promise you things will get better - it just seems a bu**er of a long time whilst you're waiting for it too Hope it will be very, very soon.

Luv Legs

frogmorton

Oh Eileen!
You had to cancel your OT apt because of the snow the other day didn't you?! :roll: Linda's advice sounds good about the splints.
Take care
Toni x

woodbon

Hi Magenta, Sorry you're so down. I can understand why, I have been very up and down this week, but a talk with my GP helped a lot. If you've got pain, you.ve got a problem and they should keep on looking at different things until they find out. Have you considered fibermyliga? I used to work with someone who had that and it took ages for her to get a diagnosis. She suffer lots of pain and was off work for ages. Sadly, she had to give up as care work is too demanding for her.

I agree with what the others have said. It souds as if you need a second opinion. As for the blood tests, they keep re-testing me as apperently the results can suddenly change. I have the soft splints, but can't sleep in them as they make me curl my fingers over the top of them and so the pain is worse, :shock: but during the day, if my hands hurt a lot, I put them on for a while, and they do help. Hope you find an answer soon. Love Sue.

magenta

Hi everyone,
Thanks for all your replies I'm going to send this message to all of you, just in case I miss someone out :?
This is already my FOURTH! rhuemy? I don't know if I can go through this all again-constantly trying to get people to listen to me.
I'm going to give this lot a fair chance and see what they come up with-it's only been my 2nd appointment. The first one was great, older man who said he would refer me to pain clinic, OT (had to cancel cos of snow and sick child) and maybe more MRI's and he wanted details from dentist about OA. Second appt. was with a young female who wasn't very understanding and I had some issues with her. She was basing all the things she said to me from blood results. Wasn't interested in OA or pain relief. Numbness in hands, she actually said to me it sounded like my ulnar nerves were being pinched but she had to prove to consultants that my elbows were inflammed before she could refer me for a nerve test!!!!! She then tried to put me off the test saying that I would have to wait months and months for it and could I be bothered?
I've got splints (hard) but I thought I wasn't supposed to wear them during the night-don't know if these are the same as the ones people have mentioned.
I was told by one of the 'other' rhuemys that I probably had fibromyalgia but that has just been ignored by everyone I mention it to. I feel like I'm banging my head against a brick wall!!
Thanks again to everyone and hopefully I've answered everyones questions
Magenta xx
Forgot to mention that I've also been down the homeopathic route and the only time that helped was when I was admitted to the Homeopathic hospital years ago for a week (twice) but you have to be in the system for that and I can't now do that cos of the kids. I've tried acupuncture but I found out I was allergic to the standard needles and can only use gold-my physio at work won't order them in for me!! Any other physio I've seen won't do acupuncture. I'm starting to think it's me-I must have been bad in another life

woodbon

I am sorry, I hadn't realised just how much you have been through: I can understand totally that you don't want to change rheummys again and I agree with you. Personally, and I am certainlly no medic but I can't understand why they don't do a simple nerve test, as they don't take very long and can discover quite a lot. I have an ulner nerve problem, which it discovered and also carpel tunnel in both wrists, although I only noticed symptoms in the left hand, the test proved that the right was in fact my worst hand :!: But that doesn't help you. I can only offer sympathy and say keep on at them :!: Love Sue

magenta

Hi Sue,
I would have thought a nerve test would be simple enough. The older dr also mentioned the carpal tunnel test too. This other dr is a pain. She wants to see xrays of elbows before she'll even consider putting me forward for test-apparently there is only 1 hospital in the whole of Scotland that does the test?! I must admit to not really believing that one. I've also got a lump on elbow and she wants to see the xray to see if it shows up but the way the xray was done, I think it will be missed!
My next appointment is in 7wks time and I'll mention the pain clinic. Even the co-dydramol now isn't hitting the pain. She seems to think me pouring all these pain killers into my system is ok? They were going to try Sulphasalazine but cos I had no signs of inflammation in blood they didn't want to give me it-couldn't justify it. She said it would harm my liver (I know you have to get LFTs done regularly) but whats all the paracetamol/co-dydramol doing? Thanks for letting me rant,
Magenta x

suncatcher

Hi magenta sorry you are not well. when i was zero negative i was not given any thing not even a pain killer they just thought i had lifted my son who was back then six months old out the cot wrong and it was a strained musle. every morning i woke with pins needles and numbness and i had used to have to slapp the hands and arms togeather to get the feeling in them. i also was unable to put a foot down flat on the flour as i was in so much pain. this used to last above two hour and the fatique i could barely do any thing. I had to teach my daughter then eleven to carry son down stares give him a bottle and make it and make his breakfast and her own food and sandwiches and i had no help as i live away from family so my son missed out on play groups and i felt like a ninty year old it hurts to remember this so my heart goes out to you who are still suffering i would ask for a second oppinion go to another hospital i would keep on badgeing them and i know it is so hard when you are suffering and no one is saying exactly what it is im so sorry you are suffering . from joanne price

magenta

Hi Joanne,
Thanks for that. I just want to know what's wrong with me.
You've now been diagnosed with RA haven't you? How many years were you seronegative? Hope you don't mind me asking :?

Magenta x

suziev

hi

what a totally carry on your having, what i want to say was that am sero neg and am classed as having inflam arthritis and my blood test have mainly come back ok, i know at the very start after the birth of my son i had bloods taken they came back raised next lot came back normal but i still felt the same. it took 2 rhemys first one said i have reactive without doing any tests on me but i now have a rhemy who finally give me my diagnosis and sorted out my meds but it's been a hard time getting to this point. i could have cried with happiness when my rhemy believed me. like scottishlass said blood test ain't the be all and if your like me you just have to keep pushing them. is it 4 rhemy in the same hospital? could a change of hospital help? what about heading back to your gp and asking for stronger meds from them?
i do hope you get sorted
suzie

woodbon

Hi Magenta, It is so frustrating when one doc says something and another one something else :? , makes you give up faith in them :!: . Maybe the new rheummy wants xrays to rule out something that wouldn't show up on a nerve test? It does seem strange that only 1 hospitial in the whole of Scotland can do this though :!:
When you're in pain it makes everything so much harder to bere, dosn't it? The only thing that I can think of is to just keep on, have all the test they suggest, ask loads of questions, give as much information about your condition as you can, don't give them an excuse to say you're not co-operating, and maybe in a while they'll come up with an answer that explains all. Don't stop asking questions, let them know all the time how worried you are and how much its effecting your life. Well, I can't think of anything really constructive to say, I just hope you feel better soon. Love Sue xx

magenta

Thanks Suzie and Sue,
This is my 4th hospital too! I'm running out of hospitals to try
I go to my GP on Monday-I'm off work at the mo, so will ask him if there's anything he can do but I know he'll probably leave it to rhuemys. I know someone has mentioned Fibromyalgia but do you get inflammed joints with this? I might set up a new thread.

I feel very frustrated and when the rhuemys say the same I just burst into tears!!! I'm hopeless with trying to get my symptoms across :oops:
Thanks again,
Magenta xx

suncatcher

I was seronegative for eigth months. It started of in my hands and arms. At first I just thought it was that I was lying on them at night. Then I could not lift my arms up, and had trouble lifting my baby out of his cot. I found that every day tasks tiring. Often I had to sleep after making the bed, end up with pain and so fell to sleep. Leaving my husbanhd holding the baby, wondering where I had got to when he eventually noticed. Putting feet on the floor in the morning was difficult and I ended up tiptoeing round the house for 2 hours. Everything in the morning went at a fast pace, except for me, more like a snail. I could not hold a knife to spread the butter, so my eleven year old daughter (she is 15 now), ended up having to spread the butter and jam in a morning. Then the pain started to affect my knees, also the fleshy part of my arms and legs. My ankle joints were week and I used to get tired out very quickly. Playgroups were very difficult to get to at times, and I recieved some less than encouraging comments. They could not see or understand what I was going through. I had to see 5 doctors before anyone did anything for me.

All the best Joanne

lindalegs

I suppose you've already done it in the past but we need to help any way we know how...........write all your syptoms down (or get someone to write them for you if it hurts too much) and can you keep a symptom/pain diary to take with you in 7 weeks time? Rate your pain from 1-10 each day and night and go from there - this will give you somethingto focus on when you see your rheumy and if you're tearful you can slide your diary/chart over to them and they will be able to see for themselves.

I agree with your earlier post and that you should stick with your present Rheumy as you did find the older man helpful and also they need a fair trial before you sack them - let's face it at this point in time, with your health as it is, you can't afford the energy, mentally as well as physically, to go chasing round for someone else. I would think that when you've had a firm diagnosis and some empathy you'll find it easier to settle down.

As a footnote the hard splints I mentioned earlier were just for night wear and they were worn under the hands and fingers not over them - these I would think are different from what you describe.

Hope you feel better very soon.

Luv Legs

lindah

Hi, hope you feel a little brighter today.
I had my nerve tests done in December but here in the North East we must be really lucky as I was given the referral appt at my Gps in November,with a choice of venues.Had a cancellation and ended up in the Non Inflammatory Rheumatology Clinic at an evening clinic. This was in the same part of the building where the physio is.
What I was wondering was maybe your doctor could refer you to one of these.Apparently they do weekends too.
The tests are just done with a portable machine with wires which sent pulses from different parts of my arms to my fingers and the measurements taken. A little unpleasant but with what we have to put up with with the arthritis ,nothing to worry about.

magenta

Thanks everyone-again
Going to do the pain diary for next appointment and I'll try Gp and see if he can do anything about nerve test.
Lindalegs-I think the splints you're talking about are the same as ones I had made about 9yrs ago. I've since lost them but OT are going to make me some more. I've tried to wear my 'brown/velcro' splints today. My left one was making my wee finger numb? I give up :!:
Magenta x

rubyrude

Magenta don't know if this is similar, I had pain for about 5 years and was told it was everything from housemaids knee, tendonitis and eventually gout. I had tests they were all negative, when I was finally referred to hospital they diagnosed PA as this will come back negative but beacause of my pain and visible symptoms they said this would be the likely cause. The reason it took so long for them to diagnose was the fact I had no skin problems.
Keep pushing them and don't get to down.

magenta

rubyrude wrote:

Magenta don't know if this is similar, I had pain for about 5 years and was told it was everything from housemaids knee, tendonitis and eventually gout. I had tests they were all negative, when I was finally referred to hospital they diagnosed PA as this will come back negative but beacause of my pain and visible symptoms they said this would be the likely cause. The reason it took so long for them to diagnose was the fact I had no skin problems.
Keep pushing them and don't get to down.

Hi Rubyrude,
I suffer from 'sausage' fingers and toes and some of nails are ridged. I keep mentioning PA but they just ignore me :roll: They take my blood results so literally i.e. "Your ESR/CRP is low so you can't have inflammation :!: and your RF is negative so you can't have arthritis" :shock:
Magenta x

felice6605

Hi Magenta,

I'm sero negative too. I know the feeling of almost wishing for a blood test to actually prove some of the agony!

I found that the steroid injections and later the tablets really didn't work for me. From what I've read, seronegative RA responds quite differently to the usual RA drugs. I'm currently on sulfasalazine and meloxicam because I want to get pregnant soon.

The meloxicam is an nsaid cox 2 inhibitor. For me it has been almost a miracle drug. Things aren't perfect on it, but manageable. Hydrotheraphy in the local hospital pool worked really well too. You can ask the RA nurse for a refferral.

I'm fortunate because my husband is a medic - my rheumy actually trained him during med school - they have both worked hard to juggle the drugs until I started to cope.

You might need to do some research on your own and go back to the rheumy armed with questions and facts. Take your most assertive family member or friend with you too! If you get the option of medical students sitting in on your consultation, take it because the consultant will try to show off his/her empathy skills for an audience and may be more proactive.

I hope some of this helps even a little - take care of yourself.

magenta

Hi Felice,
Thanks They were going to put me on Sulphasalazine but decided against once my bloods had came back-they 'couldn't justify it'!
I think the hospital (Gartnavel in Glasgow) has a hydrotherapy pool? I'm going to ask to try that.
I'm having terrible problems with wrists, hands and elbows just now. I think I may have carpal tunnel and culpal(?) tunnel and the tops of both hands are very,very painful My GP, who was very supportive today asked what painkillers I was on but didn't want to put me on anything stronger-I'm on co-dydramol. I don't really want anything stronger but the pain going across my hands and my little finger on left hand is getting to the unbearable stage.
I've had the Anti-CCP blood test taken and I'm like you-I want it to show up something so they know I'm not making it up!
If I took someone from my family to appointments-we would probably end up being forcibly removed from premises
Magenta x

xxloulou

Hi Magenta,

I was diagnosed as a kid with seronegative JRA and I don't know when or if that ever changed. I had a lot of problems with tingling/numbness of my hands 18mths ago and it turned out it was my neck.

Don't know if this helps but thought I'd chip in!

magenta

Hi,
Thanks. I've been wondering if it's all coming from my neck too. I've been getting numbness in hands etc when lying flat on my back! I'll mention it to my rhuemy next time. I think an MRI would be useful but don't think they'll give me one.
Magenta x