处理诊断
你好all, just joined and looking for some friends to share stories and advice. Apologies for the length of my story:
I have just turned 29 years old, I have worked the last 12 years in the hospitality industry running around like a crazy person, incredibly active. Last year I took lockdown into my stride and got into the fittest shape I’ve ever been. My diet was fantastic, I even began inspiring others and built a following online.
当我们经历了短时间的船尾回到工作er the first initial lockdown, I found it difficult to maintain my active 12 hour work days AND my fitness training, and started waking up with pins and needles in my hands and arms daily, then within weeks couldn’t even get myself out of bed. My partner would have to lift me off the couch and open bottles for me, open door handles, help me out if the bath. I was in agony.
当然，由于目前的气候医生和医院，当然是忙于步行的忙碌。在我的GP坚持不懈之后，我能够让他们进行一些血液检查。我的祖母患有关节炎，我觉得这可能是类似的。我做了鲜血，他们说“就是这样可以去”我说现在会发生什么？接待员说：“好吧，如果您没有收到我们的消息，没有什么消息是个好消息”，没有人与我联系。当我与医生取得联系时，他们说“您的血液恢复正常，一切都很好”当然，我知道不是。我不断地和医生，他们为我开了一些疼痛杀手，最终将我转介给风湿病学家。
一个月过去了，我再也听不到。然后，我收到医院的一封信，说风湿病学家拒绝了我的转诊。在他再次尝试之前，我不得不进一步继续前进，最后几周后，我能够与风湿病学家接听电话。
The rheumatologist prescribed me some steroids (prednisolone) to trial for 3 weeks, booked me for X-rays on my hands, wrists and feet, and for further blood work. It was almost another month before I received a letter to book these appointments, which were on the 15th December (this was after someone on the phone directed me to the wrong hospital so I ended up in 2 places on the same day). I wasn’t having the best of luck.
The rheumatologist said she would check in with me in the new year after my steroids had finished (I finished them 6th jan this year) - I heard nothing. The prednisolone worked wonders for me and I felt almost “normal” again. 2 weeks later, having still heard nothing, I contacted them myself and they said I was on the waitlist for a call in February. By this point the stiffness and pain was returning. I asked for information on the X-rays and blood work I had in December as I’d still not received any results.
A couple more weeks passed and I received a letter with the results of my tests: “unremarkable” nothing wrong, again. They pushed my rheumatology call back further to March, which I received yesterday (3rd March).
This call was with a different rheumatologist who diagnosed me with “seronegative rheumatoid arthritis” - I had all the symptoms but none of the blood results to support it, negative rheumatoid factor, negative ccp, low inflammatory markers. But he said it was clear from the response to the other medications trialled that this is what it was.
在那个5分钟的电话的空间中，一切都改变了。Big medication words and new information “disease modifying anti rheumatic drugs”, drug education clinics, treatment harmful if I planned to get pregnant, potential hair loss, high risk liver disease with alcohol, that it was rare at my age, I didn’t know how I felt.
我被指向该网站以获取更多信息，这无疑有助于提供更多信息，并更好地了解我面临的这种新的长期条件以及如何适应未来的生活方式。
I would love to hear how others dealt with their diagnosis? How has it affected them now? Have you had to change much in your lifestyle? I’m genuinely interested to hear your stories.
感谢您抽出宝贵的时间来听我的声音。X
Comments
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shell_h 主持人帖子：494你好@samban92- Welcome to the online community!
I can see you've had a difficult time getting doctors to listen to you and process what is affecting you and your health. Having a fairly sudden onset of pain and an inability to get up and being told that you're fine is not helpful. It does sound like you now have, after a lot of perseverance on your part, a useful diagnosis and you're being given the help you need.
Seronegative Rheumatoid Arthritis is basically Rheumatoid Arthritis which doesn't show up on blood tests. The treatments for both are extremely similar. Do take a look at类风湿关节炎|原因，症状，治疗（与企业炎）- the information on living with RA is very helpful. We also have a lot of information onDMARDs（改良疾病的抗疾病药物）希望有所帮助。
我可以说，个人是37岁，患有关节炎（在我的情况下是骨关节炎）可能会非常沮丧。每个人似乎都认为关节炎仅适用于老年人，因此他们不了解何时痛苦可以阻止您做过去的事情。但是，我还发现这个社区，朋友和家人确实加强了关心。在某种程度上，这听起来很有意义，但它确实帮助我与喜欢我的人在一起，而不是其他任何东西。我知道那些选择与我在一起的人，尽管像我这样的慢性病，这真是一种可爱的感觉。
Things can be difficult - I mention the people as for me it has been coping with having to change people's expectations of what I can do which has been the hardest thing. But arthritis, while it can be serious, is a condition you can totally get used to and cope with. You may have to make some changes to your lifestyle, and learn about changing your expectations, but don't think it will stop you doing everything you want. There are ways around it, medication which helps, and your having been fit to start off with is very useful as keeping fit and strengthening the muscles around your joints is one of the best ways to improve your long term mobility and pain relief.
As you used to enjoy exercise, do have a look at our information on exercising with arthritis - this is definitely a hobby you can keep up and still do. Don't feel that arthritis will stop you.
Have a look around the rest of the community and do join in with any discussions you find interesting. We're a friendly bunch of people so don't worry about joining in.
It's lovely to meet you!
Shell
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百合 成员帖子：1，，，，365Your story just goes to show how persistent we need to be sometimes. It's a shame it has to be like that at any time, but more so now; falling ill during the pandemic is really bad timing, myself included. The lack of medical care for non-covid conditions has been a part of the collateral damage in such an awful world-wide situation.
Both my sister and I have osteo arthritis, but my grandmother had dreadful rheumatoid arthritis, after having been so active all her life. It can be quite a big mental adjustment, so give yourself time to come to terms with this, and learning what you are still able to do, find new ways to do things, replace things you can no longer do with other things that you enjoy. Find different ways to keep up with friends and family, and try to help them understand how this affects you, so that they can be as inclusive and supportive as possible. Your husband sounds like a real star.
I don't have personal experience of your condition, but others on here have, and they will help you to understand what adjustments you may need to make, including exercises and drug treatments that may help you. And stay gently persistent with the NHS to get what you need. We do have to cut them a lot of slack at the moment, as they are still in a state of chaos, and it's not their fault. But many are now getting back into their stride and picking up from where they left off 12 months ago, and if we don't wave a flag occasionally, they can forget we're in the wings waiting.
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SamBan92 成员帖子：10 -
百合 成员帖子：1，，，，365
您会发现3个月会很快发展 - 更糟糕的是，没有约会，时间似乎无休止地延伸。
尝试节奏自己。认为自己是固定的（如果减少）储罐中的燃料，并确定最需要花费的燃料。在忙碌的一天之后，让自己恢复时间（又称加油时间），重新配置构成“忙碌”的内容。基本上，要发展优先级的超级大国，说“不谢谢”和“也许下次”，并提出了更可实现的选择。寻求帮助也是一个超级大国 - 基于它。
实践与疼痛管理。在b找到位置ed that enable you to have a good night's sleep (I have a bizarre arrangement of cushions propping up bits of me in bed thatworks tolerably well ) , hot baths, hot wheat bags, cold presses, TENS machines, meditation, mindfulness, gentle to moderate exercise, yoga or "pilates lite", and of course, drugs. Work out what works for you. It's pants that any of us are having to deal with all this at all, but you can moderate how badly it affects you, even if it does feel like a competition between you and the RA to see who keeps ahead as the condition changes. It just takes time to get the balance for you right.
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朱莉_J 成员帖子：4你好，
Ive been in a similar position as you.
去年年初，我开始加强运动和痛苦。当第一个锁定进来时，我发生了一个很大的爆发，在GP通过电话给予了许多药物之后，我发现自己在Amaltrixaline上。这使我在最糟糕的痛苦和动作丧失之上使我如此糟糕，以至于我最终坐在GP上，拒绝移动，直到有人看到我为止。我不得不在amaltrixaline上冷火鸡，并穿上类固醇（泼尼松龙）。我迅速进步，以为我已经超过了最糟糕的情况，直到我不得不摆脱自我创伤性的类固醇。当我们进入第二次锁定时，疼痛和僵硬又回来了。幸运的是，我的长大的儿子与我锁定了。它像被公共汽车撞到一样回来。我的手臂失去了动作，膝盖，腹股沟，肩膀，脖子和手臂的僵硬和疼痛。我无法打扮自己或管理基本任务。 The fatigue was like wading through treacle and the brain fog made even basic thought processes impossible.The pain was completely unbearable. Again after weeks of fighting to get seen by my doctor i was eventually given an emergency appointment at the hospital.
我现在正在使用磺胺吡啶，并正在努力工作以恢复运动。我设法获得的一切都是一场战斗，并永远被带走。我正在等待OT，医院的生理等，因为它还没有回来。从那以后，我的紧急医院预约是在12月初，一次Zoom预约。我的全科医生正在监测进度并进行血液检查。Sulfasalazine一开始就让我真的很糟糕，但现在已经用抗胃涂层定居了。我最终还被诊断出患有血清阴性炎症性关节炎和纤维肌痛。
我正在努力管理良好的健康饮食，减少糖和加工食品，这有所帮助。我仔细，轻轻地运动，管理睡眠。到目前为止，我仍然下班回家，自十月以来一直没有真正希望很快回来的希望。我正在尽可能多地使用积极的自助层。该医院最近建议一本书，名为“四个支柱计划”，由朗格·查特吉（Rangan Chatterjee）撰写。我发现这是一本非常有用的想法书。您可以在亚马逊上轻松获得它。
I would be really interested to know how you get on and anything that is working well for you as there are times when everything is a real struggle and its good to feel that you are not on your own. Im finding that adaption is the key at the moment and as much positive thinking i can muster. Also taking one one problem at a time and trying not to get overwhelmed with too much information in one go. Also a new supportive mattress on my bed was a godsend.
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chrisb 主持人帖子：325你好@Julie_J
欢迎来到关节炎论坛。beplay体育怎么下载
我看到您一年多以前就开始出现症状，您的GP处方了Amaltrixaline，随后是类固醇。经过一些初步改善后，您的症状恢复了。现在，您已经遇到了磺胺嗪，这引起了其他问题，但至少疼痛现在可以控制。
您希望其他经历过类似诊断的其他人的反馈以及他们如何管理症状。好吧，您来对地方了，我敢肯定，还有其他论坛成员可以根据自己的经验为您提供一些宝贵的建议。
If you’ve not visited our website then the following links may be of use to you:
希望您能发现参加论坛有益。
最好的祝愿
克里斯布（主持人）
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百合 成员帖子：1，，，，365
你好@Julie_J，，，，my condition is different to yours (OA to hip, recently replaced), and I realise how fortunate I am that my condition can be fixed mechanically. My condition appeared at the beginning of the pandemic too. Rubbish timing eh?
您遇到了多么的挣扎，但我真的很佩服您如何努力负责它。特别是与您的GP坐下来！听起来他们现在更加支持。我相信您的积极态度会帮助您找到一种方法来充分利用您的身体和生活方式，尽管我敢肯定，当您有任何感觉时会有动作。
A lesson I learnt early on from this forum is the power of distraction, taking your focus away from your pain by becoming absorbed in something you enjoy, Also, try to replace everything you have to give up with something new, so your life doesn’t get smaller so much as changing direction.
there’s also a very good section on this site on pain management, which you may find helpful.
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瓜唑杆 成员帖子：16只需阅读您的帖子并为您感到自己，从活跃到痛苦的情况下是可怕的。没有一天是一样的。我也患有伺服阳性类风湿关节炎和OS/关节炎。请您的医生开一小剂量的泼尼松，直到您预约为止，它将帮助您或要求一些Casprin Cream，我发现这就是所谓的，它可怕的等待治疗，但至少您在这里知道，其他人们知道您正在经历什么，
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Flycatcher 成员帖子：25Different details but similar story, got diagnosed at 30. Don't worry about DMARs, you'll be momitored closely, been there, done that, no trouble!
给你所有的拥抱！
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Yvonneh 行政人员帖子：864我也受到了我的欢迎。正如您提到的那样，故事真的很有帮助，到目前为止，许多人患有关节炎的人与我们分享了他们的故事。这是一些指向其中的链接
and I'm thinking you might be interested in research going on at this moment. This is just one of 4 or so research studies being carried out by Versus Arthritis
Definitely lots of light at the end of the tunnel
Yvonne X
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谁在线上
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