Don't know if I should laugh or cry: Suffering from... - NRAS

NRAS
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Don't know if I should laugh or cry

Suffering from joint pain and stiffness for two years now. In the beginning not too bad, just a bit annoying but it just gets worse to the point where I have problems working. Been seen by two rheymys who can't find anything since all tests are normal including a bone scintigrafi. However the only thing that helped me so far is ibuprofen (takes a bit of the pain) and prednisolone (takes away all pain and stiffness).

So now I've been referred to a pain clinic to see if they can help me getting some relief from the pain. I will be starting 5mg slow release morphine tomorrow. However I just read the doctors notes and she writes that she believe I have, a as of yet undiagnosed, form of inflammatory arthritis. I really don't know if I should laugh or cry. It feels like I am running in circles and everybody is telling me that they can see I am in pain but since they can't find anything I am not sick...

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It's really difficult trying to describe the pain that goes alongside inflammation isn't it. I explain that what is visible in my wrists is just the tip of the iceberg. It is the internal inflammation that makes me feel unwell. I hope the Doctors get to the route cause of your pain and you can get on the right treatment quickly.

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thanks a lot. I do hope the pain clinics notes to my GP will make them consider arthritis again. My GP claims it is not based on my blood test and the word of the rheumy.

If the slow release morphine doesn't help or I can't take the side effects I think they will put me back on prednisolone. Neither meds is something I would like to be on long term when I don't have a dx

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Sadly lots of people with joint pain conditions experience a lot of doctor/consultant appointments before they get a firm diagnosis and get the pain under control. Keep a bit of a log of your symptoms, as a worsening of symptoms, or a worsening or other joints being affected etc could help them to diagnose. Also, if you get any visible swelling in joints, always take a photo to show to the doctor at your next appointment. I hope you get to the bottom of the cause of the pain soon and get support managing it.

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Thanks a lot. Unfortunately my fingers and feet only swell a bit so it is hard to document in pictures. I find it hard to take it at same distance/angle every time so they all look different :-)

I do know I have some swelling since I can't wear my rings anymore

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If you can get someone else to take the photo that will often help, and if looking at fingers, it can help to take a photo of both hands, so that the swollen joints can be compared with non-swollen ones. Still hard to see sometimes on a photo, but it could all help. Make sure you mention the rings as well, as that is a sure indication of swelling! I really hope you get some answers soon on the cause, but even without a diagnosis you can of course use this forum for help and support, as you are clearly experiencing symptoms in common with others on here, regardless of diagnosis.

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Hi there, If it's any consolation it took the doctors and Rheumotologists around 13 years to actually diagnose my sero positive erosive Rheumatoid Arthritis. I kept backwards and forwards to different healthcare outlets, outpatients, etc... I kept on saying how can I be in so much pain and you tell me there is nothing wrong with me??? It got so bad I could hardly pull the bed clothes off of me first thing in the morning as my hands were so swollen and sore, then finally they found it. But apparently the disease has to be at a certain stage before the Rheumatoid factor shows itself. I was also diagnosed with Fibromyalgia at the same time as the tiredness is unbelievable too. I am now on Methotrexate (metaject), along with Enbrel (Entaracept), injections once a week, and prednisolone 5mg every day, and have been now for about the last 4 years or more. They do increase the dose of prednisolone if I have a flare up, but 5mg is the maintenance dose. They were hoping that with the Methotrexate/Enbrel combination I would be able to stop taking the steroid, but every time I go below the 5mg it flares again. It is no joke being in pain all the time, and my tired is tired, as I often say. I had to stop my full time job, but now work from home on the phone doing market research and although I am in pain most days, its bearable. Don't despair there are ways around it and I also find that I do pilates which is a gentle stretching exercise that helps with my mobility. Good luck and keep on at the health authorities, I feel sure they will get to bottom of your pain and find you some good relief. It just takes time. Dont give up!

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Wow 13 years is a long time to get your diagnose, but I'm glad at least they found it. And though I hope it won't be that long for me, it does give me some hope that someday they will figure out what is wrong with me.

I know about the tiredness, I am constantly ready to sleep. It gets worse if I've been busy with work or out among people (I expect from me trying to appear "normal"). I got tired of people telling that they are tired too or didn't sleep well or whatever. I've been there and know this is different and much worse so I stopped telling people I am tired. If they ask I will say I am absolutely exhausted.

I am still managing to work full time, I am lucky that for the past 5 months I've been allowed to work from home around 95% of the time. I've wouldn't have been able to keep it up otherwise.

I really don't won't to have to go on sick leave, not even part time. Here in Denmark the system is horrible if you are sick for a longer period of time. I was on part time sick leave a few years ago due to a whiplash injury. The whole system just stressed me out.

I had to have monthly meetings with them, luckily I could do most by phone since I was working part time. But then I got assigned to a new social worker, who insisted I'd show up for a meeting in person. I tried to explain the time didn't suit me since I was supposed to be at work. She then told me it was very important I came to the meeting, the purpose of which was to ensure I I kept my connection to the labor market. I just started laughing at her and told her I believe the best way for me to do that was to actually work when I was supposed to :-)

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Info on pred if you take this you need adcal bone tablet knock you bones this stuff also if they take you off it their is withdrawal symptoms reduce gradually Get them to check you out for bone TB try 1 tab b12 1 tab follic acid 1 tab cod liver oil 1 tab crondotine not the cheap stuff on this tab 1 tab bone tablet from docs adcal give it a month see how you go

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Thanks. Right now I am trying outnthe slow release morphine. First day today. Seems to relieve some of the pain but not the stiffness. Have made me incredible tired ( feels different from the “normal” fatigue) and dizzy. Hope this will go away soon. Hard to work when feeling dizzy all the time. This is the reason I had to stop tramadol

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Remember, for many one the most worrisome symptoms of their RA is fatigue. This is true for me. Unlike tiredness, fatigue does not improve with sleep. To me it feels much like the lingering effects of a bad case of influenza. I was diagnosed 8 years ago, and I still struggle with it. Fortunately Adderall helps dramatically with no adverse side effects. Of course some do have side effects.

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Geez I aM so new to this I wish I could help you. Just keep after them. I had to! It took several trips to the Dr to just get blood work done because they thought my RD was an infection and sent me home 3 times w antibiotics and steroids. I just kept pressing til I got the answer that I really didn't want and now have to live w the rest of my life. Still in shock!!!!!

Praying for you

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If can't decide between 😂-ing or 😭-ing why not do both 🎭 , mjf09? 😌 🙏

Pain Concern forum ( healthunlocked.com/painconcern ) has additional lovely people with ideas/ experience that may help? 🤔

Wishing you relief, mjf09. 🙏 🍀 🌺 🌞

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