Symptoms and Diagnosis
Here are some definitions below on how the medical world diagnose PR or view the symptoms.
'The attacks usually affect only one or two joints at a time. They start abruptly and can last for hours or days. The attacks may recur with unpredictable frequency — from every few days to every few months. Although Palindromic Rheumatism can recur over many years, it doesn't usually cause permanent joint damage.'
joints are most commonly involved.
Constitutionally, the patient may or may not have a fever, and swelling of the joints.'
'Palindromic Rheumatism describes a syndrome where there are recurrent episodes of pain swelling warmth and stiffness of joints. The problem usually involves 2 or 3 joints, which have onset over hours and last days - weeks, before subsiding. However episodes of recurrence form a pattern, with symptom free periods between attacks lasting for weeks to months.'
'The unusual features of this syndrome consists of the sudden and rapidly developing afebrile attacks of arthritis or periarthritis, occasionally paraarthritis, that continue for a few hours or a few days and then disappear completely. There is pain, redness, swelling, and disability of one (usually) or multiple joints. The interval between recurrent attacks is extremely variable. There are no joint deformities or roentgenographic manifestations.'
may show an elevation of the ESR and CRP, but are otherwise unremarkable.
In the language of someone who has had it for well over 20 years.
My PR is usually extreme pain and or inflammation in the joints and or surrounding (soft tissue) area. You may get Inflammation (Inflammation includes Redness, A Swollen Joint and Heat in the affected area) with the affected joint/s or Pain, and or stiffness and numbness during a "Flare Up".
"Flare Ups" can happen at any time and for any reason. The amount of pain and inflammation varies from joint to joint or time to time and person to person. Some people have PR in one or two places only, where I and some others have/had it in every joint upwards from my little toe, all the way to my jaw. A Flare Up usually last between minutes to on average a week (4 to 5 days) However it can last several weeks especially when the inflammation is transient and moves around the joint or the joint is being constantly over used. (In my case they can last at least a month in the same joint area before it moves on)
A Flare Up can happen once/several times a month/year and then the person goes into remission for months or years (usually in the beginning/start of symptoms occurring) or it can happen a lot more frequent, even with Flare Ups happening so frequently they are virtually constant and having multiple, overlapping Flare Ups. This irregular pattern can make it very difficult to diagnose.
PR can and does go in to remission on it's own, you may have had bad flares for days, months or even years and then get a break. No one knows why but it happens, you may be on medication at the time and think it is now working. The break in flares is a blessing which will get you wondering why, what has happened to cause this, be it medication or a change in your life etc. My advice is to enjoy it whilst it lasts as it may just come back when you least expect it, with no invitation or explanation why.
Your body (as in my case) can be like a pinball machine with pain, stiffness, aches (niggles) or numbness just going from joint to joint or several joints together at once. This is because inflammation is present in the sub levels (not visible by the eye) of all the joints and that is the pain you feel but can't see. So even though you haven't a visible red swollen joint because of the amount of inflammation present, you still get the pain. I have this all the time with major flare ups on top of that. The chronic pain and constant aches and stiffness make me very tired and suffer with depression most of the time.
I often get flares and pain that travels! An example starts in the wrist, which can then go one of two ways. One, it moves onto the hand, then into the fingers. Two, it moves to the elbow, then on to the shoulder, then to the neck.
There can be many other symptoms that seem to be involved or happen around the same time as a flare up, too many to mention as everyone seems to experience different things but some examples are:- flue, sore throat, allergies, head aches and depression and high temperatures.
Note: If you have experienced a sore throat or a salmon coloured rash around the time of a flare up you may find the 'Stills website' of interest. You can find the link on the links page. Some other forms of Auto-immune diseases/arthritis have rashes etc as part of their symptoms so it is always best to consult your DR/Rheumatologist for a proper diagnosis and to rule out allergies to medication etc.
Also there shouldn't be any shame with depression, with what we have to go through it's justified. Many people with PR have had to wait years for a diagnosis and to have their symptoms acknowledged. Many sufferers have felt at sometime that they were going mad again this is understandable with their situation. Not all people need medication or can take medication because of the side effects. Usually a diagnosis helps the sufferer with their depression and some won't need to take any medication for depression. However some may need to take an anti-depressant to help them through difficult times.
If you are suffering with depression you should seek medical advice, however the forum is always available if you need an understanding person to listen.
Tips On How To Get A Proper Diagnosis
These are my tips on how to help you get a proper/quicker diagnosis.
1. If you have been experiencing symptoms mentioned above, seek medical advice and go visit your Dr/GP and if need be ask to see a Rheumatologist.
2. Keep Records, Diary/Journal of your flare ups. The information you need to keep should include:- Which joints are affected, how long the 'flare ups' lasted, days/minutes etc Pain levels experienced and any other symptoms like inflammation, fever and rashes. Also any other information you think may be helpful. If you have anything like inflammation/redness to show, take photos. These records will help your Dr/Rheumatologist to see a history of symptoms, they will also help you see how many times you have been affected and it puts things into some perspective. It can take a while to see a Rheumatologist and like most things you will probably be flare free when you have your appointment. By keeping a record it will help show what you are going through and stop you worrying, trying to remember things that happened a couple of months ago. It also helps if you keep records after a diagnosis with medication as it helps remind you day to day remembering to take medication. It will also help you with work and sick pay/ or claiming benefits.
3. If you are seeing a Dr/Rheumatologist who has never heard of PR or doesn't recognise it exists, ask to see someone else, you can usually be referred to another Dr/Rheumatologist. In the UK you can also ask to be referred to see someone outside of your local area. If you live in a country where there is little known about PR print off the IPRS leaflet or information about PR and take it with you to your appointments. I find if you ask for the Dr/Rheumatologists advice about something and ask their opinion on a matter rather than going in telling them what you have, it usually works better. Remember there are so many Auto-immune diseases out there and the symptoms can be very similar or over lap, just because you have similar symptoms of PR doesn't necessarily mean you have PR, even if you think it is what you have. It is better to get the right diagnosis than a quick diagnosis. If a DR/Rheumatologist doesn't think you have PR and you do you can always ask for a second opinion?
I will add any more tips as and when I come across them....