Rheumatoid arthritis: "I never tried to accept the disease but to move forward"
Published 20 Mar 2021 • By Candice Salomé
Sisyphe29, a member of the Carenity community in France, recalls the loneliness she felt when she was diagnosed with rheumatoid arthritis and her rheumatologist's lack of bedside manner. She has since changed and adapted her care to her needs and wishes.
She shares her story with us on Carenity!
Hello Sisyphe29, thank you for agreeing to share your story with us here on Carenity.
First of all, could you tell us a bit more about yourself?
I am 40 years old and I live in the Finistère department in Brittany, France with my husband and two teenagers. I am a secondary school teacher. I am passionate about creative hobbies: sewing, embroidery, jewellery making, etc. I find my energy in nature, I love the great outdoors. I love walking, discovering new horizons. I'm a hypersensitive person. I would describe myself as someone who is delicate but who always ends up getting up again because I have a great thirst for life.
Image courtesy of Sisyphe29
You have rheumatoid arthritis. Could you tell us how the disease entered into your life? What prompted you to seek help?
My first symptom appeared in June 2018: a pain in my right wrist radiating up to the elbow. At first I thought it was tendonitis, but the pain did not go away, even when I used my right hand less. Gradually the pain was accompanied by stiffness and then a loss of mobility in the wrist. The palm of my hand also became painful, and I had a sort of twisting sensation under my little finger. My wrist never became swollen or red like you hear about in rheumatoid arthritis.
I had also been having neck pain for a long time. Even today, I can't say whether this was part of the early stages of the disease or not.
How long did it take for you to get a diagnosis?
The diagnosis wasn't made until March 2019.
When the wrist pain started, 9 months before, I was being treated by an orthopaedic surgeon and a physiotherapist for unexplained pain in my right calf, presumably some kind of truncated sciatica. When I spoke to the orthopaedist about my wrist, I was first referred to another orthopaedist as he only specialised in the lower limbs. I underwent X-rays and an ultrasound, but they didn't reveal anything unusual. They then had me do a blood test which came out positive for rheumatoid factors. This second orthopaedist then referred me to a rheumatologist.
During the first consultation with the rheumatologist, she told me that in her opinion, my wrist was suffering from poorly treated tendonitis and that the presence of the positive rheumatoid factors in the analyses only meant that was possible that an "arthritis-like condition" would develop in the very distant future. I didn't really know what this was supposed to mean, but since this specialist totally excluded the possibility, I didn't dwell on it either and didn't ask her about it.
When I explained that I had been suffering from the pain and stiffness in my wrist for several months already and I insisted that it was becoming debilitating, she still said: "If you want, we can still do a Doppler ultrasound, but for me there is nothing there".
How did you feel when you received the diagnosis? Were you able to gather the necessary information about the disease?
The Doppler ultrasound was the key to the diagnosis. It showed synovitis, an inflammation of the joint.
I wasn't sure what the diagnosis meant for me and I was left with the total detachment of the rheumatologist at the first consultation. She had taken my problem so lightly that I went to the second appointment with zero worry in my mind. I had of course ruled out the tendonitis hypothesis, but I was ten thousand leagues away from imagining being diagnosed with an illness that she had crossed off the list of possible explanations during the previous appointment. However, the symptoms had started to change and I sometimes felt the same pain in my left arm and left palm as on the right.
When she looked at the Doppler ultrasound, the rheumatologist told me, as if she had always been convinced, that it was indeed rheumatoid arthritis, that there were now treatments to prevent the progression of the disease and that one could have a perfectly normal life thanks to them. She did not explain to me what the disease was, how it worked, what contributed to its onset, how it could develop, nor how the treatment worked and what side effects it could have.
I left the surgery with a prescription for methotrexate and a blood test to do before the next month's check-up.
I had been so unprepared for this that throughout the consultation I felt like it wasn't me they were talking about. Every word was said without my being able to completely grasp its meaning. No questions came to my mind because nothing seemed logical to me in what was being said to me compared to what had been said during the previous consultation.
I think I started to realise what I was in for when I picked up my box of methotrexate at the pharmacy and was given a list of precautions and possible side effects. This was confirmed when I unfolded the endless package insert and realised that it was not going to be as simple and light as the rheumatologist had said, it was not going to be the little magic pill that would end the pain and give me back my old life...
What do you think of your current care? Have you tried to see another rheumatologist? If not, why not?
The methotrexate eased the pain in my arms and palms but had no effect on my right wrist, even after increasing the dose. The neck pain has also persisted.
Several times I went to my rheumatologist completely demoralised. I told her, with tears in my eyes, that I couldn't cope any more, that I was worried. This illness had an impact on both my personal and professional life: I could no longer write, I could no longer cut my meat, I could no longer do anything with my right hand... She prescribed orthotics which gave me some relief but did not solve anything. It was only in September 2019 that I finally had an injection to restore mobility in my wrist.
Moreover, as soon as I started treatment, I felt extremely fatigued and it was very difficult to juggle my working life, my personal life and this illness. The rheumatologist denied any link between fatigue and the medication (which other rheumatologists later denied).
In June 2019, all ten of my toes became stiff. I could no longer move them. The rheumatologist didn't understand the cause and couldn't tell me for sure if it was still a symptom of RA. This lasted for a month. Since then, it has come and gone. I've finally gotten to know RA and recognised it on my own...
I didn't feel like I was being heard at all. So I went to see another rheumatologist. He confirmed the RA diagnosis of course and said: "Nowadays, people with RA lead the same life as you and me". What nonsense! And I can confirm, with even more hindsight today, that I no longer "lead the same life" as everyone else since the disease appeared.
I know that the medical advances of the last few years have been spectacular in this field and that the treatments put in place have enabled many people not to end up in a wheelchair as was the case in the past. They also make it possible to avoid or limit joint deformities. But let's not make RA patients dream of a rosy life. I needed to be told the truth and to have my daily experience and feelings taken into account.
I had to consult two other rheumatologists before I finally found someone who was human, who knew how to listen and answer questions frankly, who shared other patients' experiences with me, what she had observed and experienced, and who agreed to go at my pace.
Where do you find information about RA? How far have you gotten in your research?
In the two years since my diagnosis, I have read a lot: medical studies, theses on RA and its treatments, testimonials, documents or books on natural ways of treating it. I also got close to a few patient organisations which I only joined for a short time, as I couldn't really find my place within them. I never tried to accept the disease but to move forward. This is still the case, I am not trying to adapt my life to RA, to learn to live with it, but to get the better of it in order to regain a normal life as much as possible. I don't fool myself and don't force my body to do things that it can't handle anymore.
Rheumatoid arthritis takes so many different forms that, even though I have learned a lot from talking to other patients, it is by listening to my own body that I have learned to identify what is and is not related to RA. Similarly, it is by experimenting with myself that I can sort out what may or may not have a beneficial effect on my symptoms.
What treatment are you taking for your rheumatoid arthritis? Do you find it effective? Apart from your medications, have you tried any alternative therapies?
With the agreement of my new rheumatologist, I have stopped my treatment for a while. She's letting me do this with peace of mind thanks to very regular follow-up with ultrasounds of my hands, wrists and feet. For the moment, apart from slight inflammation in my right wrist, there is nothing to stop me from taking this life-saving break from methotrexate. My last injection was on 25 November 2020. It was no longer psychologically or physically possible for me to take these injections. There were too many side effects for insufficient benefits. I needed to find myself and to know where my body stood naturally.
At the same time, I've tried a few other things to help me feel better. I've changed my diet, for example. I also have weekly physiotherapy sessions. I do acupuncture from time to time. I regularly see an osteopath. I have also taken advice from naturopaths and dieticians, both for nutrition and advice on dietary supplements. I am learning to let go more often and to lift my nose from the grindstone in times when I'm most busy.
How are you planning to change your diet to prevent flare-ups?
As I said before, I've already changed my diet. I got the idea when I read a book an osteopath lent me by Dr. Jean Seignalet. The diet he prescribes is drastic and very restrictive. Afterwards I just couldn't see myself eating raw meat!
So, I just eliminated all the harmful things from my diet (gluten, lactose, refined sugars, trans fats, etc.) and opted for gentle cooking, meaning cooking at less than 95°C in order to avoid the Maillard reaction, which Dr. Seignalet believes is toxic for the body. This is called the "hypotoxic" or "seignalet diet".
Here again, diet is a delicate subject with specialists. Some people are radically opposed to this type of diet, but they can't give clear enough arguments to dissuade me from trying it.
I can't say whether this change has had an impact on my joint and ligament pain, it's not clear yet. On the other hand, the benefit is undeniable on the digestive pains that I had previously experienced. For this reason alone, I would not go back.
What impact has RA had on your daily life, your private and professional life?
I feel less tired since I stopped treatment. However, it is still very difficult for me to do any sport, long walks or hikes like I could do two years ago. Every morning my hands, feet, back and neck are stiff and painful. I feel like I am at least 70 years old. I'm someone who liked to do things with her hands, so I always pay for every activity I do. Sewing, embroidery and gardening cause me pain that can last for days. I don't do them as regularly anymore. I have also given up certain hobbies: I used to like working with leather, for example, but it is now too difficult.
When the pain goes on for too long, my morale goes down and my self-confidence wavers. I don't like to complain but I can't help but confide in my husband because I need to vent my frustration. Then I get angry at myself for imposing this sadness and negativity that I sometimes carry around with me. I don't want to be a burden.
At work, my illness goes unnoticed. I don't talk about it much. The pain is felt more in the hidden side of my job: correcting papers, long hours sitting at the office preparing lessons. I am often aware that I expend energy in my work that I later lose in my personal life. But this is one of the things I'm trying to readjust. I now work at 80% of full time, which is allowed to me because of my disability. My official recognition of the status of disabled worker (RQTH: Reconnaissance de la qualité de travailleur handicapé) has also allowed me to move my work closer to home, which is a significant gain in comfort.
How do you see the future? What are your plans?
I don't look as far ahead as I used to. I have a lot of incertitude. I don't know what tomorrow will bring and how my physical condition will develop. I suspect that I will have to resume treatment at some point.
So I won't talk about plans, but about desires. What I've really wanted for some time is to be able to change my body through sport. I'd like to work up enough energy and physical ability to work out and build up my muscles in a visible way. I'm a bit of a "shrimp", so I know that doesn't help my RA. So I'd like to gain some muscle mass, improve my breathing and stamina and make my body more resistant.
This would perhaps allow me to fulfil other desires: to go on a trek for several days, to go kayaking again without letting my husband paddle alone!
I would also like to travel, discover new regions, new countries, go on magnificent walks.
Image courtesy of Sisyphe29
Finally, what advice would you give to members who are also living with rheumatoid arthritis?
My advice would be not to close any doors. Anything that can improve your life should be tried. In my opinion, you should not be locked into the certainty that only drug treatments can provide something in the care of RA, even though of course I know that they can be very effective for some. I'm sure we can complement their action in a healthy way. Rheumatoid arthritis is an autoimmune disease. So many factors influence immunity!
Also, do not hesitate to consult different doctors and specialists. It is important to feel listened to by the person who manages your care.
Any final words?
Yes, I would like to add two things:
When I signed up on the Carenity forum and had to choose a username, the name Sisyphus came to me because that's what RA reminded me of at the time: endless exhaustion, futile efforts, disappointment of regularly seeing the destruction of what seemed to be moving me forward, the feeling of taking one step forward, then two steps back. The moments of respite are too short compared to the painful moments. Nevertheless, recently my load has become lighter and I haven't lost hope that I can carry it to the top, or at least not let it fall.
On the other hand, several weeks passed between the day I received this questionnaire and the day I answered it. I was waiting for the "right moment" without really knowing how to define it. I didn't want to answer it on a day when my morale was low. Conversely, when it was at its highest and I felt good, I couldn't see myself sitting in front of my computer. These moments are too precious and must be fully taken advantage of!
I started today because I couldn't keep putting off the task I had committed myself to until tomorrow. So much has happened in two years and I have gone through so many phases that I suspect that when I re-read this testimonial in a few years' time, my thinking and my vision of things will have evolved further. I am therefore giving you these momentary thoughts, to be taken for what they are: a given moment in the long journey of a patient in search of well-being.
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