Living with Rheumatoid Arthritis-My Story

I will never forget these words, I didn't really understand them at first but I do now; what they forgot to mention was that rheumatoid arthritis will take the lives of people around you if you let it.

I am writing this hub not as a medical doctor, not as a definitave advice article, not even as a rheumatoid arthritis sufferer but as the husband and carer of a rheumatoid arthritis sufferer. At this point if you choose to switch off because "I don't know what life is like for you"; then thank you for stopping by and I wish the best of health and happiness for the future

If however you would like to read on; I thank you also. It is my intention to try and give you some idea of our experiences with the hope you will take from this hub some comfort, learn something or just find it mildly amusing. For me hopefully it will be cathartic and if it helps one person then it was worth writing. If it isn't and doesn't then it can sit out there in cyberspace for all eternity.

I will have to write and publish this hub in a few parts as all in one will simply be too much to write and I guess to read at one sitting, we will call this hub part 1; please stick with it.

Finally it is important that you read this hub as an overview of our experiences, it is in no way offering you medical advice and you should always follow the advice of your medical team.

From here on in and for reasons of privacy I will call my wife Mary.

Mary was 26 at the time, we both worked full time jobs and life was all good. A trip to the Dominican Republic resulted in a serious case of gastroenteritis but apart from that life really was going well. The only minor blot on the landscape was that two or three times a week Mary would wake up in the morning with unexplained pain and stiffness. Even more strange was that this pain and stiffness was in different part's of her body, we are not talking about slight aching or discomfort but full blown; red hot poker pain and debilitating stiffness. It became a joke amongst us because we didn't know where it was going to strike next or when. Eventually and as a result of being hospitalised Mary was told by her Doctor that she must be sleeping in a funny position; he never considered rheumatoid arthritis symptoms, he advised that she should consider changing her pillows. How changing the pillows was going to cure both shoulders, elbows, ankles, fingers, jaw and knees I don't know but we went the whole hog and bought a brand new orthopaedic bed (£800) and new pillows. Did it work?

Sadly; no!

Notice I said both shoulders, elbows, ankles, fingers, jaw and knees. Generally rheumatoid arthritis is known as a duplex disease meaning it normally attacks both of something or more than one at the same time. I was also very surprised at it attacking Mary's jaw, little did I know that rheumatoid arthritis is an Auto Immune Disease. This disease essentialy attacks your immune system therefore any joint can be effected and we have a lot of joints. In my ignorance I associated arthritis with "old people"; I thought their joints hurt a bit because of wear and tear, "how stupid do I feel now"?

The serious dose of gastroenteritis may or may not have been relevant? It is accepted that rheumatoid arthritis can lay dormant until it finds a spark. In our case the gastroenteritis could have been that spark; I guess we will never know!

It was quite amusing watching Mary with bags of frozen pea's all over her body then the next day something warm trying to ease the "flare up", neither really worked but you have to laugh. Many visits to the Doctors and accident & emergency later it was decided that she had a cyst on her hand which was sitting on a nerve and must be causing all of these problems. A referral was made to the hospital specialist for this cyst to be removed and all her problems would go away.

This was all going on over a period of eight months or so; the "flare ups" were getting more severe and more regular. Mary was becoming more and more depressed, confused, and upset. Mary felt as if she was going mad; she didn't know from one day to the next if she would be able to move, she was feeling stupid because she was describing the problems she was having but they came and went; were in different parts of her body and didn't seem to have any explainable cause.

Eventually the referral for the cyst came, hope was on the horizon, the cyst would be removed and life could get back to normal. We attended the appointment and the very nice Doctor confirmed she had a cyst, he reassured Mary that it would be a simple procedure to remove it and that would be that. He then went on to say that the "flare ups" Mary was describing were not being caused by this cyst rather he suspected that she might have some kind of arthritis; we both laughed arthritis isn't that for old people. The Doctor felt that Mary should see a good friend of his (they say that when they are talking about colleagues); not a Doctor; a Professor. We stopped laughing; if it's a job for a Professor it must be serious!

Whilst all of this was going on we tried to live as normal a life as possible, joy of joy's Mary became pregnant with our first child, we were excited and apprehensive at the same time; it;s not as if Mary didn't have enough problems without throwing a baby into the mix. The "flare ups" continued with their usual ferocity and the day to meet the Professor came.

After a thorough examination he delivered his verdict, "I am pleased to tell you that you haven't got the nasty one" he said, that was great but we didn't know what the nasty one was so we asked him to elaborate. He went on too explain that he didn't think Mary had "Rheumatoid Arthritis" but just to be sure he gave her an open appointment which meant that the next time she "flared up" she should go straight too him without waiting. The very next day Mary had an almighty "flare up" and within thirty minutes we were back in front of the Professor, fifteen minutes later he diagnosed rheumatoid arthritis and issued her with an apology for the previous day's diagnosis.

I was sure Mary was going to be furious with him for playing with her head, she didn't; she cried; then cried some more; (I wasn't expecting this next part ) Mary then laughed and thanked him, she said "thank God someone has finally told me there is something wrong with me; I thought I was going mad", she then turned to me and said "we wasted £800 on a bed"; I cried with laughter too!

The Professor then went on to explain "rheumatoid arthritis", he discussed rheumatoid arthritis treatments and decided Mary would benefit from (Sulphasalazine and naprosyn; UK drug names) but not until the baby was born as he was worried about the effects of the medication on the baby. This was like a double edged sword, we had finally got somewhere only to be told nothing could be done about it for at least another eight months. Ironically the pregnancy only lasted 7 months in total, our son was born eight weeks premature and after a two week stay in the special baby unit he was fine; even more ironically; Mary had only minor "flare ups" during the rest of the pregnancy. We have since learned that during pregnancy "flare ups" often subside.

There is much information on drugs used to treat rheumatoid arthritis on the internet so I am not going to go into detail here. There are a couple of terms you will come across often so it is worth mentioning them here:

DMARDs-Disease modifying anti rheumatic drugs

NSAIDs-Non steroidal anti inflammatory drugs

To get accurate and respected information on Rheumatoid Arthritis I always check on ARC here or NRAS here

Mary started the drugs and waited for them to work, in short they didn't and the "flare ups" returned with vengeance; lasting longer, measurably more painful and causing extensive and irreversible joint damage.

As mentioned earlier this hub is going to be part of an unfolding story, in the next installment I will explain how rheumatoid arthritis made us lose our home and jobs, the effects of the medication and the additional medications that were prescribed, what happened when Mary thought she had a stroke, dealing with rheumatoid arthritis as a young mum and what happened to our love life.

Please bookmark this hub and let me know if you found this one interesting, also let me know if you will read the rest of the story if I continue too write it?

You can read the second part to our story here and other articles I have written about arthritis:

What is Rheumatoid Arthritis- RA and Painful Joints- Living with Rheumatoid Arthritis part 2 of our story

Living with Rheumatoid Arthritis part 3

Over the counter pain relief for Arthritis sufferers

Arthritis and hobbies