Palindromic Rheumatism

My PR Story

Looking back, when I first had noticeable PR symptoms was as a teenager. Then it would affect a major joint like my knee, wrist shoulder etc. The doctor just put it down to growing pains and my mum would treat me with hot and cold compresses and bind my joints. The flare ups would last a few days in clusters and then nothing for days, weeks, months or even up to a year apart. Between 14 and 15 I always seemed to be unable to do PE at school. The Teacher just thought I was trying to get out of PE but previous to this time I was always so active and ran for the school.

When I was 19 I was involved in a coach crash, I thought I was alright at the time and didn't seek any medical attention. I was just starting a new job and didn't want anything to spoil it. 2 weeks later I was rushed to hospital with my leg (it had doubled in size in a matter of hours). The Drs just left me saying it was inflamed arthritis. Hours later when they were about to discharge me they examined me again and found gangrene in my ankle I was hours away from amputation. 

The time PR really became a problem was in my early 20's studying with a lot of writing the flare ups were becoming more intense and more frequent. The flare ups always seemed to be associated with me getting flue like symptoms which would just keep hanging around and I would get major flue symptoms at least 4 times over the winter and even summer months. 

Over 10 years ago it wasn't something most Dr's had heard of in this country, even today some are still unaware of PR. The blood tests, X-rays they did all came back negative and still do in a lot of cases. Even now the way they sometimes diagnose PR is by ruling out everything else first. As there is no exact blood test they can do to detect PR. 10 years ago I had no where to turn as all the test they did resulted in nothing and there was nothing they could do for me. I just accepted life as it was and got on with it, thinking that it was something I had to live and suffer with. I would go to the Dr and show him my inflamed joint/joints and he would do blood tests and X-rays and they would be normal. He said he didn't understand even if you had a cold it would show up in your blood.

I even started to think I had some rare disease at this point, as there was nothing they could find wrong with me, I also started to think it was me making it happen or that I was imagining it. You feel like you are going mad at times in the beginning because these things are happing to you and nobody knows why. In the beginning  you pray for inflammation to show people the pain your feeling and to reassure yourself you aren't going mad.

There was nothing that I could pin point that was causing it.  I tried every diet, and cut out all food at one time or another, in case it was something I was eating. I became anorexic and at 6ft I weighed as little as 8 1/2 stone. I still had PR and started to think because I was under weight it was making me worse so I struggled to put the weight back on.  When you are in as much pain as I was you will try anything, I have tried all the so called remedies for arthritis, from supplements to tens machines, massage and acupuncture with no help or cure.  I felt/feel like I was about 90 going around not able to walk straight when I had a flare up in my legs, or not able to feed myself when I had a flare up in my hands/wrist etc. What a life to look forward to, just when my life was supposed to be starting. You learn to live with these things and I was able to adjust and try to cope using the other side of my body as most flare ups take place on one side (in the beginning).

I was finally diagnosed in 2003 as my condition had got so bad I was forced to return to the Dr's. Thankfully things had changed and my rheumatologist was aware of PR. I was forced to give work up due to harassment and bullying because of my disability. The flare ups are so bad at the moment with pain and inflammation that I am not able to do any thing without getting inflamed joints and needing a lot of rest as I am constantly in pain.

How PR affects me and my life, well in the beginning it happened so infrequent I was able to keep a full time job as well as an active social life. However it's so bad at the moment it can rule my life. I force myself to do things knowing I am going to be in a lot of pain and will suffer but I have to live.

PR is believed to be caused by a strong immune system that attacks the body, in this case the joints and soft tissue. (some believe it's a bacteria living in the small intestine that also attacks the joints.) There was a belief that people who had PR had a weak immune system and would take supplements to boost their immunity this is not supposed to be the case, it's because of a strong immunity that the body has the power to attack itself. and taking a supplement to boost the immune system can just make the PR worse.

Because of the amount of pain I am in all the time my energy levels are low also with the lack of sleep due to the pain and discomfort of lying in bed. So I need to rest a lot. I can't stand, sit or lie in one position for too long because of the pain on my joints. If I walk, stand or use my joints for too long, like when preparing food, typing or driving It can cause a flare up. However now I can just be lying down and get a flare up. When the pain is so severe It's like having broken your leg or arm so therefore I am not able to walk at times because of the pain or I need an aide to help me walk. When I am forced to use either my walking stick, crutches or wheelchair the very things that are made to help me I always end up with a PR flare up and inflammation in another joint. A lot of the time however you wouldn't know I had PR if you met me in the street as you can't see my pain and unless you see the inflammation or me using an aide or limping around I just look normal.

How I see it is, if a flare up is going to happen it will, although doing things can bring it on or make it worse. I try and live for the moment, if I have to do something I prepare myself, force myself through the pain and try to enjoy it because I know I will have to rest up for a week or so after.

All of my joints can be affected from my little toe to my jaw, the pain varies from shooting, throbbing to numbness, burning and degrees of pain levels. My joints become inflamed and the swelling can move around the joint area and to other joints i.e. from my wrist to my hand joints or my wrist to my elbow then to my shoulder. it mainly affects one side at a time but can be both. You can be right handed and get flare ups more on your left side. Just when you get used to one type of pain and inflammation in one area it moves/changes so you never get used to it. I say My PR is like a Mind FCUK you can never get used to it as it is forever changing. One day I will have constant pain in all my joints going from one to another and back again, lasting from seconds to hours with one major flare up in one joint. Or I will have constant pain lasting for several hours in a number of joints with a couple of flare ups at the same time. The pain is always changing as with the type of pain. Then just when you get used to one type it changes again (no constant pain but every time you move sharp shooting pains or lots of joints inflamed at once). Or any other combination.

I have included pictures of some of the inflammation as I could find no other examples on the web. Large joints such as hips and shoulders are affected but because of the joint and surrounding tissue they don't show the inflammation as much to take pictures for example, plus it's a bit much to show even more of my body off. When the flare ups were less frequent in the beginning it was much worse, they would flare up to more than twice the size. I was hospitalised at least twice with my arm and leg. I was told that I was going to loose my leg if they couldn't stop the inflammation as it was that bad. However because it's so frequent now the inflammation is less noticeable but just as painful if not more. I also get PR in my back, jaw etc which isn't supposed to happen according to my rheumatologist, but with PR nothing surprises you.

My Living With PR And The Medication I Have Used

My Living With PR

Living with PR is different for every person (with PR) and can be different with every flare up. PR can affect a person in one or two joints only or like me every joint. Some people experience times of remission due to the nature of PR or medication. What works for one won't work for another (I will include a list of things that have helped other people with the flare ups as unfortunately nothing has helped me apart from positive thinking and rest.)

As for myself I have found the only way to live with PR is to do what you can when you can, (most of the time this will bring on a major flare up in one or more areas for me which can last twice as long so make sure what you do is really worth it.)

If the flare up is only affecting one side at a time learn to work around it as much as you can, trying not to use the affected joint as much and resting the joint/s as much as possible. In my case don't bind the joint up so you can't move it as moving the joint gently from time to time will ease the pain (sometimes) and stop the joint tightening up (you will be in pain whilst moving the joint But it can help in the long term).

Anti Inflammatory gels can help, due to the massaging, coldness of the gel. They won't stop the inflammation or pain though in my experience. Tip: if it is to hard or painful to rub in, place a bit of the gel on the area and place a tissue over the gel. This will also prevent the gel from getting everywhere over your clothes etc.

Memory foam mattresses toppers, cushions/pillows and memory foam sofas really help me it takes some of the pressure of the joints whilst resting. Tip: using the pillow/cushion in the car as a back rest or to sit on helps the joints and makes the journey more bearable.

Use as many gadgets as possible to do the everyday things you once took for granted too many to mention here but things like food slicers, electric tin openers, jar openers etc. and even a Voice Recognition Programme that types for you.

I find wearing anything tight or restricted like a watch, jewellery belts etc can cause a flare up. So I try to wear slip on shoes (or slippers) and trainers without tying the laces. I also use a pocket watch and don't wear tight clothing or belts.

Get help, use your family and friends to help you which ever way they can.

Medication I Have Used

Most Drs will prescribe painkillers and anti-inflammatories to help with the pain and inflammation. They can also prescribe anti-depressants which they seem to give you for everything these days. (I wasn't able to take anti-inflammatories or anti-depressants due to the side effects)

The Pain medication I am on is Paracetamol, Codeine Phosphate and Tramadol cocktail. They don't stop the pain they only take the edge off the pain. Although when you are in so much pain anything is better than nothing. I have suffered with side effects with most/all of my medication prescribed. All of the above have given me side effects from

Constipation, Runs, Inflammation, Head aches, Nightmares, Stomach Ache, Depression, Skin Rashes etc.

I was also prescribed two stomach tablets to help me with the side effects from the medication I have taken. For the last month I have stopped all my medication due to the side effects. I went for a colonoscopy 2 months  ago because I have been suffering with my stomach and bowels this I believe was due to the medication I take. Ongoing....They think I have IBS due to the medication.

The Rheumatologist prescribes medication used for it's anti inflammatory properties which are used to treat people with Rheumatoid Arthritis. Unfortunately none of the medication my rheumatologist has prescribed me for the PR has worked or the side effects have been too much to take. Their attitude is you have to find a balance with the medication they all have side effects but it's finding one that you can live with that is less than the PR. I've yet to find one that works so the putting up with the side effects is irrelevant.  

I have been prescribed Sulfasalazine, Plaquenil etc. All with side effects and none that prevented or helped with the pain or inflammation. Even though the above drugs can have serious side effects there are people who have PR who's health has improved due to either these drugs or similar where the PR has gone into remission or the pain has been reduced

For the last couple of months I have been off all my medication, this has really helped my stomach, bowels etc however the PR pain has been very intense and really hard to handle. The good news is I'm still alive and have been able to get through the PR pain (for how much longer without meds I don't know).

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Founded 2005.