Confused and struggling

claircoult

Hi!

I'm not having the best time of it at the moment and I'm not sure what to do for the best.

My reactive arthritis started flaring up again a week ago. I went to see the rheumy's registrar who said there was no sign of inflammation, he didn't think I had reactive arthritis and said that it could be muscular. I asked for his advice and he said just carry on as normal. They did blood tests as the rheumy wants to find out what is triggering the flares but the registrar thought they would all come back normal. He said he would phone me with the results but he hasn't yet.

I had quite a busy weekend but tried not to over do it but I guess I did because the pain is worse than ever now. I can barely walk and I can't control the pain with codeine. I don't know what to do.

I have taken gabapentin and tramadol before for flares but I get the most awful withdrawal symptoms when I stop taking the drugs I swore I would never take them again. This is all I've been offered by the rheumy, she just wants me to take the drugs and doesn't listen to me. She blames all my symptoms on me having ME (I was diagnosed with that 20 years ago when they couldn't find what was wrong with me) but I think I've had reactive arthritis all this time because the symptoms of feeling ill and having joint pain have always been the same.

The rheumy doesn't take me seriously because I don't have pain and swelling in the joints, I have problems around the joints, just above and below the knee and on the inside of my ankle and just above my wrist but she didn't even look last time because she said the joints in my hand looked normal despite it causing me moderate pain at the time.

I don't just want to take pain killers to mask the pain, I want to know what is going on and do something about that. How can I get the doctors to listen to me and take me seriously? I haven't been given any advice on how to deal with this, I'm just so confused and struggling to cope. I have 3 young children at home, I can't be doped on on strong drugs all the time, I just want to feel better.

Sorry for moaning. Thank you for listening.

carola

I am so sorry to read of your pain and your frustration.

I don't know what advice to give you aside from take help from friends and family when you can. Don't just try to soldier on in silence. Impossible not to stress out but really try hard not to put extra stress and pressure on yourself as it just makes it all worse.

The only thing I can think of is to keep badgering GP and Rheumy for more tests as you cannot be expected to carry on like this. You need answers.

Sending calming and positive thoughts.
Carol

dreamdaisy

There are as many as 200 forms of this dross and they can be very difficult to pin down and/or diagnose. Has anyone suggested fibromyalgia? I think that causes muscular pain etc. Have you ever had MRIs done, or at least Xrays? Reactive arthritis is not easy to deal with - don't anti-biotics help clear it up? It's another auto-immune based one, I think, and could well be caused by the ME (another auto condition I believe). I am lucky that my arthritises are clear-cut and straightforward, I really feel for you on this. I am so sorry. DD

valval

i can understand why you feel as you do any one would it the not knowing that gets to you when you have an idea what it is you know what to do for the best have you asked to be sent for second opinion i think it might be best to go to gp and take your post from here and show her your quality of life is affected this not acceptable some times we have to tell them as it is instead of saying it ok not to bad etc good luck val

Ria

Sorry to butt in but you said you got withdrawals from Tramadol. I've just stopped 3 days ago and feeling really ill and I wondered what the withdrawal symptoms were and if that's why I feel ill?

I hope you get sorted soon though as it's tough especially with young children.

All the best

claircoult

When I stop tramadol I get really bad flu like symptoms. I get fever and chills, one minute I'm red hot and sweating then next I feel so cold I shiver and can't get warm. My head pounds like I've got a hangover and I feel so very ill I can't sleep or rest but I can't concentrate on anything to take my mind off it either. I lose my appetite and get stomach cramps. It's all rather nasty. I've been on tramadol 3 times and this has happened every time I've stopped taking it. I have read that you're supposed to reduce the dose slowly over a couple of weeks to lessen the risk of side effects when you stop.

Clair

grampyal

Hi Clair,
It seems like they're saying its all your fault. I'm sure that many of the medics feel we are an inconvenience to them. All you can do is to keep nagging them and make sure they listen which I know from experience is not the easiest thing to do. On the Tramadol topic, when I had the Revision I was taking 8 Tramadol plus 8 Paracetamol . This was in hospital and prescribed by them. When I closed my eyes, I don't think I was sleeping, I'd see grotesque faces and felt someone touch my leg but of course there was nobody there. Another patient refused tramadol, saying that they gave him halucinations. Since coming home and the pain lessening I have gone down to three and now two Tramadol a day with no problems. I do find that combining Paracetamol with the tramadol is far better than taking them on their own.
Best wishes, Al

Ria

claircoult wrote:

When I stop tramadol I get really bad flu like symptoms. I get fever and chills, one minute I'm red hot and sweating then next I feel so cold I shiver and can't get warm. My head pounds like I've got a hangover and I feel so very ill I can't sleep or rest but I can't concentrate on anything to take my mind off it either. I lose my appetite and get stomach cramps. It's all rather nasty. I've been on tramadol 3 times and this has happened every time I've stopped taking it. I have read that you're supposed to reduce the dose slowly over a couple of weeks to lessen the risk of side effects when you stop.

Clair

Those symptoms are like mine at the moment...... stomach ache, headache, hot & cold, restless and generally feel rubbish. thanks for enlightening me as this is the 1st time i've been on it.

frogmorton

Hi Clair

it is awful not getting help.

So many of us go/have gone through this when our bloods come back 'normal'. I have also been to teh rhumy's and had obvious inflamation ignored by a registrar.

l wonder have you ever had any xrays MRIs etc done? Just a though as maybe something visual may help 'prove' your case.

I know how you feel about meds and kids because l was on major stuff when l had to have back surgery and at the time was single parent to two kids 5 and 8. I did take them though and got so l could 'cope' ok on them and function ok.

To me it's as though you have been given 1 label and no-one is listening to you.

Love

Toni xx

claircoult

Sorry you're feeling so rough Ria. If it is due to the tramadol you should start to feel better in a couple of days. I found drinking plenty of water helped.

My pain is still pretty bad today so I phoned up the rheumy;s secretary but I forgot she doesn't work on friday's so I let a message and hopefully someone will call back monday. I went to see one of the GP's who said I need to go back to see the rheumy soon. She gave me lactulose for the stomache ache I have and said my ankle looked puffy, something which the registrar completely failed to notice! I do feel like I'm banging my head against a brick wall but I'm not going to let them fob me off any more.

Clair

Ria

............ and some people just breeze through life complaining when they break a fingernail lol!! All of us on here go through the mill at times but as I always say 'there's always someone worse off'.

Keep your chin up; you'll get there in the end.

liesa

so many of us have the feeling we are banging our heads against brick walls... we cant help it if we dont fit text book illnesses...

i take tramadol when the cocodamol snt woking so in a bad day i will take cocodamol and 2 hours later the tramadol so eventually they do something for the pain, i used to suffer from side effects, especially headaches and lightheadedness, and so drowsy, but i do get that at all now, i hate taking so many painkillers but needs must, or i would be sitting here in tears all day and night, i have diclofenac if i really really need it but dont often take them as they make my stomach so bad,
mine doesnt show up sometimes and i feel a real fraud but i dont wanna be sitting home as miserable as hell with constant pain i wanna live, so i feel awful when they say 'nothing is showing' i had a bone scan last september and the rhuemy all he kept sayng was 'we dont see any inflamation around the joints and you will benefit from a gastric bypass (he knew im on the wait for it) so basically undergo life changing surgery and never get pain again???? the RA factor shows up in my blood and he says i have early degenerative arthritis in my hips... i have no idea as to whats going on in my body, my dr has asked for me to get a series of blood tests this week to see whats going on...

hope your soon sorted Clair xx hugs xxx

claircoult

Thanks for the replies everyone.

I had a call back from my rheumy's secretary today about my blood test results. They all came back normal except I am still deficient in vitamin D so I have phoned my GP about that. I was on adcal D3 but it doesn't seem to have helped any.

My inflammatory markers were normal which was surprising given how much pain I was in. I hope they don't use that against me. Now I have to have some more bloods taken tomorrow to look for antibodies to compare with the ones 2 weeks ago but I'm not holding out much hope.

I had a bit of a moan to the secretary, she caught me at a bad time as I'm feeling pretty ill at the moment. I didn't get much sleep last night as I had chills and fever and I feel dreadful today. I told her I wasn't happy and I didn't feel like I was being listened to. She suggested getting a second opinion but I really don't know who else I could see. Chesterfield rheumy refused to treat me, Nottingham rheumy refused to even see me and my GP won't refer me to the local rheumy at Bassetlaw because he's not thought of very highly. So the plan of action is to get the bloods done and wait for the results and see what happens next.

Clair

traluvie

Hi Clair..

Just read your post..
From what i have read from other peoples stories.. there are quite a few people who have had to fight with Doctors to get recognised..
My bloods for inflammation have come back ok and whenever i went to rheumy i never had swelling.. I think that because he believed me and my symptoms were consistent of inflammatory arthritis he did further investigations..It wasn't untill i had bone scan that the inflammation showed up on it and he then started me on relevant medication..
I think if you are not getting anywhere fast then i would def get a second opinion, see another doctor..
Let us know how you get on.. hope someone takes note of you and gets the ball rolling..Have you tried writing a symptom diary of a typical day?? Words can sometimes mean more when read!!
Thinking of you.. hope you are not too bad today...