 |
| Flu-like symptoms |
 |
| Inflammation in neck, jaw and tongue |
At 3am I was awaken by a mixture of pain and severe nausea. My mouth was watering as I attempted to prevent myself from vomiting, but due to an inflamed esophogus it made swallowing difficult so I ended up toggling between choking and gagging. My body was aching in too many places to count, in a way that resembles being beaten or recovering from an accident or injury. There was no need to take my temperature, the sweat saturating my pillow case was enough proof that my body was in full attack. The fatigue and stiffness was so extreme that I struggled to get out of bed, and as I did I could feel the saliva accumulating, stinging the sores that align my tongue and the other soft tissue in my mouth. I did manage to make it to the bathroom in time to relieve the nausea and then return to bed to get some sleep til morning.
 |
| Exhaustion even after rest |
So how will this affect my day? My fingers are swollen and so sore some would find it tough to type, but I think I'm so used to it that I just fight through the pain. Laundry is taken off of the to do list, for even if I could get the loads to the washer, unloading, folding and putting the clothes away wouldn't be possible due to weakness in my wrists, forarms, shoulders and tricep area. Also, I live alone so there isn't anyone to help get the laundry back up the stairs. After the nausea subsides I need to make lunch, which will be dependant on what I can physically make and what isn't too acidic as to agitate the soft tissue flare in my mouth. Later this afternoon I will likely need to nap, which I detest. I have always felt naps were a waste of time, however, my body will soon shut down and I will be left without a choice. Those without Autoimmune Arthritis may find this rescheduling and reworking daily tasks frustrating, but for me it's become a way of life.
The type of arthritis I have is Autoimmune Arthritis. It causes me to rearrange my day, at any given time, due to fatigue, fevers, exhaustion, joint pain and muscle weakness. It causes sores and inflammation in my soft tissue, particularly on my tongue; when my jaw joint flares at the same time I may go a whole day on a liquid diet because it's twice as hard to open my mouth or to chew food. It wakes me up in the middle of the night and makes me vomit.
All arthritis isn't the same. If you have any type of arthritis, before you say "I have that too" to another patient, know what type you have and what type they have...because if your arthritis doesn't make you vomit, or at least cause nausea or flu-like symptoms, it may not be the same type of arthritis.
This post is based on personal experience and is not resourced to facts from any other source.
Learn more about differentiating your arthritis at www.IAAMovement.org.
You have accurately described what so many have difficulty finding the words to communicate. I hope this raises awareness. I am sharing this with those I know. Thank you and God bless you.
ReplyDeleteThank you Belinda! I've always enjoyed writing and this is just a great way for me to be ME, outside of IAAM. I LOVE running the nonprofit but this is a great escape to just be Tiffany, Autoimmune Arthritis patient. I'm glad it's helpful :)!
Delete:) Thank you...yes, by all means share. While I run IAAM and must be a little more careful about political correctness within the organization, this is my voice not group-affiliated. So I intend to make this blog VERY real. I'll talk about challenges, flares, victories, etc... things maybe not everyone is ok with talking about or can find the words to describe. If it helps, I'm all about diving in!
ReplyDeleteThank you Tiffany, both for the blog and the movement. This is all new to me, and it's so helpful to find so much information out there (and just other people's stories) that really reflects what I'm dealing with ... and I'm planning to share as much info as possible so the people who care about me can begin to understand as well.
ReplyDeletePS - I hope some of the symptoms have subsided to give you at least a few moments' relief
Hi Kerry! I was a college teacher for 8 years and I kind of feel like when it comes to those "new to this" I just want to reach out and teach them whatever I can! I 'retired' from teaching 2 years ago but it sure does fill that void doing this!
ReplyDeleteNice Job Tiffany! I've had similar nights. When I do really get the flu, I've often waited too long to see the doctor b/c I think it's a flare. So frustrating.
ReplyDeleteWhat I find so fascinating is how every time it happens and ISN'T the flu my brain still tricks myself into thinking, "well this is just so bad, maybe it IS the flu or something I ate?" But then I'll get the sores in my mouth or can't move my fingers the next day and say, "well, hope, it's a flare!" And then on the flip side, as you said, the times I really am sick I'll often confuse it until I get a runny nose or cough or super high fever. It really does mirror the flu so much it's hard to know sometimes!!!!
DeleteVery well written. Great job of showing versus telling. (Ank spond here, with fevers and gut issues, too.)
ReplyDeleteI was tested for AS in the beginning of 2011 because I have such bad sac issues- I often have to drive on my side, pretending to, you know, lean smoothly out the window lol ;). But it was ruled out. I've since been RA/SLE but that sac area gets me too every time and my back and neck are so stiff I've had to get a memory foam mattress so I'm not totally convinced it's not a hybrid for me!!!
DeleteThere's a _lot_ of overlap. My docs looked for years for Crohn's but never conclusively found it ... not that getting images of the small intestine is easy. Then I heard garbage about AS turning up mostly in men, so I couldn't have AS, yet I did not have the rheumatoid factor, nor the antibodoes for SLE (yet I'd get a mild butterfly rash) ... Sometimes I think it's all the same problem at the root with different manifestations.
DeleteYou are 100% on the same wave length as me! I started the International Autoimmune Arthritis Movement, and recruited other patients and then a rheumatology board, to define the term Autoimmune Arthritis...which was often seen in medical journals and clinical reports but no where could we, or the rheumatologists, find an actual definition! It was more a term some of the clinicians and researchers used to speak of RA, AS and a handful of other diseases. We felt this term really talked about a specific group of diseases with overlapping onset (and aftermath) and then asked the rheumy board to determine specifically which autoimmune diseases were PRIMARY joint diseases (arthritis). That narrowed it down and fine tuned the group even MORE...because diseases like Crohn's and Scleroderma often had symptoms of arthritis (joint involvement) but not in every patient and not a primary manifestation behind the course of the disease. Crohn's is primary gastrointestinal, scleroderma is primary connective tissue, although it certainly doesn't mean they can't have major joint pain involved, it's just the nature of the disease is rooted elsewhere. SO...
DeleteWe felt if we got a very close knit group, those with joint disease primary (not joint disease secondary, like scleroderma or crohns) then we may be able to help earlier diagnosis if we could show how similar onset is in these core diseases. THEN if Autoimmune Arthritis is ruled out the doctors would have a second tier to look at- the secondary, or 'related' diseases. So let's say AS is considered, which the spondy's will often have gastro involvement and crohn's is a spondy...and AS is rules out (FOR THE RIGHT REASONS, NOT THE OLD 'YOU"RE NOT A MAN') then perhaps crohn's is the answer....and so on.
We have only just started IAAM in 2011 but we are making large strides to getting all the early diagnosis standards and links between the diseases together to at least create info for the medical world based on our findings. As we grow this will stem into research clinical grants to prove our findings and, as a result, the goal is to have more accurate information to show these diseases often appear as overlapping, yet it doesn't mean treatment should be delayed.
Good post. I have AS and even those of us with the same type of autoimmune arthritis have it affect us differently. It's difficult for people to 'get' to understand. Thank you for being honest and sharing a chapter out of your story.
ReplyDeleteElizabeth, thank you! You are SO right in that AS will affect ASers different, RA will affect RAers different, etc., etc.... because basically no one shares the same cells or genetic make up so the way the disease strand you have decides to react inside your body is going to be unique.
DeleteI like to talk about things that either aren't always discussed or are sometimes things that are uncomfortable for others to talk about but that really happen. You aren't going to find the things I talk about in the text books, but that's the idea :)!
Well arthritis can be unpleasant. But there are much more types of it. I hope this article will help some of you types of arthritis
ReplyDeleteDr Itua cure my HIV, I have been a ARV Consumption for 10 years. i have been in pains until i came across Dr Itua on blogs site.I emailed him about my details of my HIV and my location i explained every thing to him and he told me that there is nothing to be scared of that he will cured me, he gave me guarantee,He ask me to pay for items fees so when i'm cured I will show gratitude I did and giving testimony of his healing herbs is what I'm going to do for the rest of you out there having HIV and other disease can see the good work of Dr Itua.I received his herbal medicine through EMS Courier service who delivered to my post office within 5 working days.Dr Itua is an honest man and I appreciate him for his good work.My GrandMa called him to appreciate him and rest of my friends did too,Is a joy to me that I'm free of taking Pills and having that fat belle is a nightmare.you will understand what i'm talking about if you have same problem I was having then not now though.I'm free and healthy Big Thanks To Dr Itua Herbal Center.I have his calendar too that he recently sent me,He Cure all kind disease Like,Cancer,Herpes,Fibromyalgia,Hiv,Hepatitis B,Liver/Kidney Inflamatory,Epilepsy,Infertility,Fibroid,Diabetes,Dercum,Copd ,and also Bring back Ex Lover Back..Here his Contact .drituaherbalcenter@gmail.com Or Whats_app Number +2348149277967
ReplyDelete