How do you keep fighting?: Hi all. I've posted about... - NRAS

NRAS
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How do you keep fighting?

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Hi all.

I've posted about suffering from joint pain and stiffness. According to 4 rheumys I don't suffer from arthritis. But since prednisolone helps I've just been tested for adrenal insufficiency which also came back normal.

Everytime I get a normal test result back and the doctors tells me that is a good thing I get so low. I want to either cry or throw something through the window (but since it is getting cold here in Denmark I don't actually do it) How do you keep your spirit up and keep fighting for a diagnosis and help?

I feel everything is a strugle, like I'm moving in water. I am still working full-time but only because I can work from home most of the time. I really want to keep working but feel if I don't get some relief soon I won't be able to.

Sorry for the rant.

15 Replies
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Hello, I know exactly how you feel I have one diagnosed autoimmune disease affecting my liver.I also have pain in joints tendons and muscles which flares every few weeks to a completely disabling level despite being sent to 3 rheumatologists over 7 years I still don't have a diagnosis and that is with a number of abnormal blood results but my symptoms don't fit the criteria of any named condition.You asked how to keep fighting.I would say believe you will get an answer and if your current rheumatologist doesn't help find another, it took me 3 to find one who listens properly, I still don't have a diagnosis but feel it's getting closer.Also keep a brief diary of symptoms and take photos of any swollen joints and any other symptoms in case they are related for example rashes, red eyes etc.Finally be kind to yourself it's your body you know it best lack of a diagnosis is frustrating and means lack of adequate treatment so it's hard to life like this you need to do what you can to help yourself live with it, that could be a hobby you enjoy or someone to help with the cleaning.Good luck keep believing the answer will come.Jane

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Hidden in reply to jane1964

I will try to keep pushing.

With my current mood being kind to myself feels like eating a lot of ice cream, crisps and drinking wine :-) Guess I shouldn't give into the temptation but rather try to live healthy

I'm so sorry that they haven't gotten any closer to understanding whats going on with you.

I think I've asked before but have you been tested for Lyme Disease? From my understanding there aren't too many Lyme literate doctors but maybe you can find one and see if that leads somewhere? If you've been tested by your GP sometimes that isn't enough to clearly diagnose Lyme and it often goes undetected. I do know that steroids will help the inflammation and RA like symptoms that often happen with Lyme disease but isn't advised to use as a form of treatment for Lyme. Not sure that's much help to you and it may already be ruled out for you. Just a thought.

I don't know what the healthcare system is like in Denmark but I gather you can visit as many doctors as necessary to investigate whats happening to you? Sometimes it takes years for an autoimmune disease to show itself clinically but surely they will keep investigating for you?

For a lot of people it's a big struggle to get diagnosed and carting yourself back and forth to different doctors is unbelievably draining especially when you come out of it empty handed.

You will get lots of great advise on how to manage your dilemma here. I wish you strength to keep up the fight.

Lucy

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Hidden in reply to Lucy11

Hi

Thank you for your kind words. This forum helps me a lot in keeping my spirit up.

Well as long as my GP will refer me I can visit as many doctors as necessary but I think my GP is getting really tired of me. I don't know much about Lyme disease but from I've read online, Danish doctors are not that good either with it. My GP has referred me to a pain clinic, which is fine to help cope with the current situation. However she also told me remember the pain clinic won't diagnose, just help you to live with the pain. It feels like my GP has just given up on me.

My problem is that I am not ready to give up on finding out what is causing this and how to treat it. I don't feel it is OK that I'm having more and more trouble coping with work and daily tasks without at least keep looking for answers.

Lucy11
Lucy11 in reply to Hidden

Can you switch GP's or at least find a Lyme literate doctor he can refer you to? Has your GP tested for Lyme? Apparently, Denmark has had a big problem with ticks this past year and to be honest I didn't know much about Lyme disease either but a gal I race with doctors felt that she had some type of inflammatory arthritis but in fact had Lyme disease. It took two years for her to get diagnosed. She also thought that she had RA or perhaps early OA but she just felt like rubbish all the time and not only in her joints. Fatigue and overall malaise were some of her complaints. Lyme disease is easily treated with antibiotics unless it's misdiagnosed and becomes chronic. You also don't have to have the bullseye rash--she didn't have one

I think it would be worth exploring even if your GP is fed up with you or at least find out if he tested you and his thoughts on Lyme? Also Jules13 suggestion of getting into a gastroenterologist or even an Endocrinologist to check hormone levels may be another option? I would also ask my doctor very politely if he has given up on me--then I would switch! (if possible)

I would also suggest getting thyroid checked and gastro stuff. Your flares could be food allergies that are severe. It's worth getting full blood work and a reference for a gastroenterologist... the stress of not knowing is also causing more problems. I know my stress is causing massive inflammation. X

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Hidden in reply to Jules13

I am trying to control my stress with mindfulness. But I agree not knowing causes stress. I find it especially hard to try and act normal when I just want to scream. But on the other hand I also want to go out and be with friends and sort of "forget it" for a while.

Since my TSH levels are within normal range I doubt I can get my GP to refer me unfortunately.

Jules13
Jules13 in reply to Hidden

Hmmmm. I'm not sure what else to suggest. X

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Hidden in reply to Jules13

Thanks. I just might have to be annoying and keep insist

Jules13
Jules13 in reply to Hidden

You must. I now think I had the RA way before 8 weeks ago. Kept insisting they run blood tests because I was so tired a the time. Now I think they must have been lesser flare ups. Keep Insisting. So what if they think you're a pain in the bum. X

I can only echo the good sentiments below. You must have a condition of some sort, but the standard investigations haven't found out what The worst thing to be in a Health Service process is unusual, which is of no help to you at all. Remember that you and your family and friends ARE very important.

Has anyone ever come with you to any appointments, I have found that another voice agreeing or adding to the detail makes a difference. One time I'd basically been told that a knock on effect of RA may never completely improve and it could take up to a year for it to be as good as it was going to be. My friend piped up and said. "what about the pain, she can't sleep and that's making things worse" I then got an extra prescription for a drug that actually did help.

Dealing with a long term condition is a battle that never ends. Mine was settled but isn't now and I'm having to call and push to get another round of infusions. If you are calm and persistent you will get help, it just can seem like no-one is listening.

Thinking of you and willing you keep fighting, you are worth it.

I always stress what I'm doing work wise and elsewhere. You being incapacitated will cost the system more in the long run. As others have said I don't know how the health system works in Denmark but some of the staff at least must be caring to do the job.

Very best wishes

Michele

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Hidden in reply to rawillbebeaten

Thanks for the kind word.

Just finding everything really hard right now. And though they try feels like family and friends doesn't really understand since I look fine. Most of the time I can cope with that, but right now....grrrr

I do keep pushing, just gets harder for every test being negative. Soon I don't know what to push for

rawillbebeaten
rawillbebeaten in reply to Hidden

It must be really hard, but it must be something - it IS NOT in your head and you want to get better.

I did find that Acupuncture and Reflexology helped when I got nerve issues in my feet as a result of an RA flare. Not cheap but it may help pin point where the problem is so you can try a different tack with the medics. I still have reflexology every month or so.

You are not alone so keep fighting and communicating. Have you tried the advice line on this site by phone or e-mail?

Thinking of you and wishing you strength and grit

Michele

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Keep on seeing different doctors. Some doctor somewhere should find something. I know it's difficult, but you know your body and something is wrong.

I hope you find help soon

Sue

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Hidden in reply to Hidden

Thanks so much. All the support on this site means so much and probably one of hte reasons I keep fighting

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