I previously wrote my first blog entry called “The Invisible Visitor” and have gotten feedback that some of you would like to know more about the specific symptoms that PAN has. While it can manifest in many different ways in different people, there are some core distinctions that direct doctors to testing whether you have PAN or not.
Blood Test and Blood Levels
Throughout your testing, blood tests is the initial step your doctor will take to diagnosis. You may have a high CRP or ESR.
If your blood levels are out of whack and you have “lumps” (as I always refer to them), your doctor will probably suggest for you to get a biopsy.
My lumps (subcutaneous skin nodules) that are red, raised, painful to touch and after a few weeks turn out to look like bruising. Performing a biopsy will help determine what kind of lump it is. A surgeon will choose one of these when they look “fresh” or have just recently appeared in comparison to the older ones you may have that are already degrading.
The surgeon then cuts out this lump, going beyond the subcutaneous fat to retrieve a glimpse of what it looks like in your skin. These lumps look a little bit round, but in actuality is what happens when your blood vessels get inflamed. The bruising is caused by blood leaking. Now this all sounds a little frightening, but it is a simple process, and can be adjusted over time with the right medicine.
You might experience a polyarteritis nodosa rash like clusters, most commonly on your legs. They sometimes aren’t even itchy (like mine) but are still classified as rashes when the doctor takes a look at them
Having an ongoing autoimmune condition can be quite draining. A lot is happening inside and so you will feel its effects from time to time. It’s a good idea to create better sleeping patterns such as sleeping earlier, waking up the same time every morning and keeping distractions out of the bedroom like TVs.
A lot of people with autoimmune conditions suffer from insomnia. This can be caused by pain also. You need to tell your doctor about this and you can discuss together medicines or body positions to help you sleep better. Because sleep is very important in your healing process.
You may be experiencing painful, restricted movement in your joints. This could be in your fingers, arms, legs, knees etc. In my experience, the joints feel warm, are hard to move, and can be at times quite painful.
I found that the temperature also impacts on the pain level. For instance, winter is not a good time when you have arthritis.
There are advanced arthritis biologic medicines that may help reduce this pain. This is generally a shot once a month. It may work miracles for you, but everyone is different. Best speak to your doctor/specialist and make sure, you’re clear to take this and it won’t interact with any existing medicines you might have.
Because of inflamed blood vessels, this can lead to systemic functions of the body being affected. PAN manifest in many ways, such as heart palpitations, gastrointestinal problems etc.
This can get quite complicated and once multi-organ involvement occurs, you should really be under medical care and monitoring. It is my hope that you are able to get help before this ever starts happening to you.
Personally, I have experienced heart involvement and was earlier on diagnosed with Rheumatic Fever. I have been fortunate however to catch it in its early stages to stop its effects on my heart from developing further.
Central Nervous System (CNS) Manifestations
I only recently experienced this during the evolution of my condition. PAN can remind you that it is still there in the most random of times. Before I was meant to fly out on an international flight I experienced tingling and numbness along the left side of my body. I’ve experienced memory loss, decreased alertness and the inability to think clearly. In more severe cases, you can get seizures (I only experienced a partial one) or even strokes.
Now this is not meant to scare you but just make you aware that it can happen. I know I was surprised when it happened since I had no idea it could affect me that way when I was so used to the other symptoms.
There are some other symptoms that can happen too, such as migraines, hot body flushes, fever etc. For further reading, have a look at: http://www.empowher.com/media/reference/polyarteritis-nodosa.
Another important little note I’d like to make is that symptoms like these don’t always occur at the same time. These diseases are of a chronic pattern, but they do change.
You may have periods called “flare ups” where the pain just seems so much more worse than usual, you will need to adjust your activities and medicine to counteract this. You may also experience periods where there is no pain or symptoms whatsoever, this can be great, but remember you still need to eat healthy and not go all crazy because it can make your condition come back with a vengeance. Over the years, you will learn what helps eases & alleviates them and what aggravates them. Here are some random things I’ve learned:
We still need to exercise
Yes we have conditions that make us tired, and not feel at all like getting out of bed. We do have excuses also when we get to the gym. But you don’t have to do the most strenuous exercise. Just a little exercise in general is good enough.
Try less joint-impact activities like swimming, yoga, tai chi etc. I found these to be very beneficial in increasing blood circulation (if you don’t it can make the pain worse) and also stretching out tired muscles. By using energy you’re also slowly creating energy in yourself. Paradoxical it seems I know, but ask any gym instructor or avid sports person, you feel more energy from doing exercise. Also, the more you weigh the more weight your putting on your joints, which for example makes arthritis in the knees more unbearable.
Warm compresses are wonderful
They can help ease the pain after a long day of work or maybe some exercise
Drink lots of water
Just like with any disease or condition, water is important. You don’t want to get dehydrated. I’ve been in hospital because of dehydration, which is complicated even further because I had PAN
If you’re going through winter, or live in a generally cold area. Make sure you have some nice warm socks and clothes, by keeping the joints warm it won’t be so painful. However, I have met people who are just the opposite and found it more painful in the heat. Whatever the situation, if temperature affects you, it’s obvious you need to adjust your dressing habits.
While subcutaneous nodules can be painful, gentle massage can help release the pain. Don’t do it too hard because that can also do more harm than good. But like I said, gentle massage can be very relaxing and help you take the tension out of your body.
Take it easy
Don’t push yourself, if you know you can’t open that tin of spaghetti with your own hands, then don’t! Ask someone else to do it, or maybe think of investing some of those nifty openers made especially for people who can’t open things a certain way. I’ve seen various products available at stores that help to make things easier around the house and at work.
Instead of focusing so much on your pain, think of other things. You can try meditation, listening to your favorite music, no matter the distraction, try to not to think too much of the pain because then you are focusing on it and making it worse. Have you ever had times where you are really engrossed in an activity say a movie, and you don’t notice the pain so much? That’s exactly why you should try to do other things
Yep, it is really, really important to take your medicine. Take it on time, and with food. I know it can be hard, I’ve had pretty bad habits earlier on where I would take medicine in the middle of the night, without food and then have terrible stomach pains the next few days.
I’ve also experienced when you feel great, no symptoms at all and decided not to take my medicine. Bad idea.
Even if you feel great, inform your doctor, you might be able to get off that medicine you feel has too many bad side effects, but you need to ween off them first. Slowly. Especially with medicine like corticosteroids (aka prednisone, solone etc). By just cutting off medicine, you might be doing a lot of harm, the body needs to slowly get used to not being on them.
Avoid Soft Drinks and Alcohol
I don’t know if there has actual been studies to prove this or not, but just personally I’ve found that drinking soft drinks or alcohol seems to have a really bad effect on my body. I get worse the next day, with more pain in joints or nodules appearing. Have any of you found this?
This too, is a little controversial. While I do still eat red meat, I found that I can’t eat it often and have even tried eating steak, pork chop, other red meat dinners over the course of week and found my joint pain had increased, new nodules were spreading. It can be seen as a challenge though. Over the next few weeks I’m going to find out more about whether diet can have a bigger impact on our symptoms.
I do believe there is a connection, because unhealthy eating isn’t helpful to any condition. I have come across some interesting blogs too and will share them in my next blog post. My doctor in the Philippines told me that food sensitivities could have an impact and to keep a diary of the foods I eat and if I experience any differences. However, like I said I’ll tackle that for another blog. If you have any ideas about this please do feel free to share, I’d love to hear your opinions.
Got any other ideas to help alleviate/relieve symptoms? Write to me here at Autoimmunee. I hope my suggestions help, even if just for a little while.