Gary's PR Story
I have always tried to be a positive person (can be very hard) and I try to instil positivity in others, as I feel it will help others to come to terms with their PR and journey ahead. However I just wanted to say before you read my story, that my PR is an extreme case to most cases the IPRS has come across. You should not take my situation as a norm that you will experience. There are plenty of people with PR that maintain a relatively normal life with or without medication especially when attacks are few and far between.. My story is not to worry anyone with PR or give a bleak outcome of life with PR. Like we always say PR is different for everyone. I am sure if you are sitting reading this in pain you will be thinking I bet you mine is worse, but this is not a competition I just wanted to be honest with my story but not to worry others.
Looking back, when I first had noticeable PR symptoms was as an early teenager maybe even younger. Then it would affect a major joint like my knee, wrist, shoulder.... The flare ups would last a few days in clusters and then nothing for days, weeks, months or even up to a year apart. The doctor just put it down to growing pains and my mum would treat me with hot and cold compresses and bind my joints. When I was about 10, I was rushed to hospital because my whole body had become swollen including my face, I looked a right sight. They did all the tests and found nothing the could identify as the cause and by the next day the inflammation was going down. 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 even ran for the school. You get the usual comments 'just being lazy' and 'he is growing so fast, no wonder he aches'.
Skip a few years....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 in A+E saying it was inflamed arthritis, hours later when they were about to discharge me they examined me again and found gangrene in my ankle, apparently they said I was hours away from amputation and losing my leg. They said I would be in hospital for some time after that and would need all sorts of physiotherapy however the inflammation went down several days later and as soon as the infection was cleared up I was able to leave the hospital.
The time PR really became a problem on a regular basis was in my early 20's whilst trying to study with a lot of writing, the flare ups were becoming more intense and more frequent. The bad 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 during summer months. As soon as I got over one period of fever/flue back it came. Again the Drs were saying it was stress and over doing it due to my studies/exams etc.
Over 15 years ago it wasn't something most Dr's had heard of in this country (UK), even today some are still unaware of PR or have very little knowledge of it. 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. 15 years ago I had no where to turn as all the test they did resulted in nothing, there was nothing they could do for me except give me painkillers and anti inflammatories. 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. The last thing I wanted to do was sit and wait in the Drs or Hospital waiting rooms in so much pain but I just wanted to say look at this its not in my head its real now find out what it is and stop it happening again.
I even started to think I had some rare disease at this point, as there was nothing they could find wrong with me, I thought it was because it hadn't happened to anyone else before. 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 just to show people the pain your feeling and to reassure yourself that you aren't going mad. My PR causes me so many problems not only physical but mentally, in the past It made me feel like their was some kind of devil in me playing with my mind as well as my health. You can't believe when something is causing you so many problems that Drs are unable to find the cause or help you.
Looking back there was nothing that I could pin point that was causing the flare ups/attacks. 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 so 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. However you can 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 (although I do now get it in both sides, both hands and feet etc even though most medical definitions of PR are single joints and usually only one side).
I was finally diagnosed in 2003 as my condition had got so bad I was unable to walk for over a month therefore I was forced to return to the Dr's. I wasn't expecting them to find anything or be able to help other than pain killers etc. Thankfully things had changed and my Rheumatologist was aware of PR. When he saw my photos and heard my history he said it was text book PR. I was also forced to give work up due to harassment and bullying because of my disability. It was previously so hard to try and disguise my pain and flare ups whilst at work. The reason why I tried to hide the pain/inflammation was because I hadn't had a diagnosis and didn't know what to tell people, what was wrong with me.
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 I need a lot of rest as I am constantly in pain. I not only experience pain throughout my body on a daily basis, I also get inflammation in my joints, pins and needles and numbness. I get very tired due to the constant pain and need to lie down for most of the day as it’s the only way to reduce the pressure/pain in my joints. I also have to try and rest and sleep a couple of times a day. Due to my pain and problems I have when lying still in bed, mean I get very little sleep now.
It was then I decided to research PR and also did a lot of searching on the net, unfortunately there was so little information and no real place to talk to others that I decided to start my own website. I first started a page on my own website in 2003 which just kept on growing. With the help from my family and friends I was involved in starting the IPRS in 2004/2005 and the rest is history.
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 a kind of 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 afterwards but I have to live and can't not do anything these days without bring a 'flare up' on and more extreme pain.
Because of the amount of pain I am in all the time my energy levels can be low, also with the lack of sleep due to the pain and discomfort of lying in bed through the night, so I need to rest a lot. I can't stand, sit or lie in one position for too long because of the pain and stress 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 greater flare up. However now I can just be lying down and get a flare up, so I try and live as best a normal life when I can. 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 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 caused by the aide. 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, However my family always say you can see the pain in my face.
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 afterwards. However I am only able to do one or two things a week if I try and do too many things together the pain/inflammation is too much to cope with. I know there are people in the world a lot worse of than me and I get mad with myself all the time and say it's only pain, I'm still alive and should just get on with it but its just not that simple.
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 appear to 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 the same joint on both sides. 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. My PR seems to be one of the more extreme cases as most people with PR may only be affected a couple of time a week/month and are able to keep a full time job and family etc However most people with PR do experience extreme pain and Bad Flare Ups at some time. If I hadn't have had such extreme PR I guess I would have never started this website so it has its positive side as so many people have benefited from this site.
I have included a selection of photos including inflammation I have had (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 examples, 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 also hospitalized at least twice with my arm and leg. However because the inflammation is so frequent now, the inflammation is less noticeable but just as painful, if not more and all the time. 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. Most people with PR however don't seem to get the same amount of inflammation or redness to show for their pain.
Living With PR And The Medication I Have Used
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 some kind of remission due to the nature of PR or medication they are using. 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). Don't over use the joint if you are in too much pain.
Anti Inflammatory gels can help, due to the massaging, coldness of the gel But they won't stop the inflammation or pain, in my experience. Tip: if it is to hard or painful to rub in, place a bit of the gel on a tissue and place it over the affected area. 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 whilst using the internet etc.
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 as much help as you can, 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 was on was a Paracetamol, Codeine Phosphate and Tramadol cocktail. They didn't stop the pain they only took 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 have now told me 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 Methotrexate 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 some kind of remission or the pain/inflammation 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).
Update, since I first wrote the above I have tried Pain Killer Patches (Buprenorphine Transdermal Patch) etc as well as other types of pain killers at the moment I am trying Meptazinol Hydrochloride for pain. I now use these with paracetamol and codeine although they give me less side effects than the tramadol and patches they leave me very light headed and unable to do much without feeling dizzy/tired. The pain is always more extreme than the pain killers can cope with and the more meds I take the more problems I get with my IBS etc.. I am using Meptid (Meptazinol Hydrochloride) at the moment few and far between which I can take in small amounts without too many negative side effects. I seem to be having problems with side effects with most things these days, I used to be able to drink alcohol not any more, previous shampoos now cause me problems along with other products I used to use with no problems, I joke and say I'm falling apart but something is happening to my body more and more now. Mebeverine has helped my IBS but I can only take a couple every now and then when conditions are very bad as the can have the opposite affects if I take on a regular basis.
A lot of people with Auto-immune diseases can be more prone to having side effects from medication etc but there are a lot of people with PR and RA whose PR pain and life has been transformed by medication or change in diet, to find out more join the IPRS Forum.
To be cont.