Susan
Susan describes having experienced pains and swellings for about ten years. After her fibromyalgia diagnosis, she was referred to the pain clinic which she found very helpful. Her family have been a great support and her faith keeps her going.
Susan is 54, married and has three adult children. She had to give up her career as mental health therapist and support worker due to her health problems. Ethnicity: Black British
More about me...
Susan describes having experienced pains and swellings for about ten years. She had been a very active person and had initially thought the pain and swellings were simply a result of “overdoing it”. One day at work she describes suddenly starting to feel very unwell, like she was getting a “24-hour bug”. Leaving work that day, what was normally a five-minute walk to the Tube station took Susan over half an hour, and she describes falling asleep on the train and missing her stop.
The following day, Susan made an appointment to see her GP and says she just “broke down” as she was in such “desperate pain”. Several blood tests showed up nothing and over the next two years she went to see various specialists who initially wondered if she might have sarcoidosis (an inflammatory disease that affects multiple organs in the body) or arthritis.
Susan describes struggling at work and eventually had to take five weeks off due to ill health. At the time she didn’t feel that her employers were sympathetic.
Susan describes her GP as being “so empathetic” and after another visit to see her, the GP suggested she see an occupational therapist. The occupational therapist examined her and told her that he thought she had fibromyalgia. Susan’s initial reaction was “No, that thing is nasty, I don’t want it”. The occupational therapist said she would need to see an arthritis specialist for a diagnosis.
The arthritis specialist confirmed that Susan did indeed have fibromyalgia, which Susan found surprising as fibromyalgia hadn’t been mentioned at previous visits. He suggested she take some tablets which she was reluctant to do. However, she describes him as being “very honest” and “transparent” when he said that there was no point in arranging another appointment as “we can’t help you”.
Susan says that after she told her employer about her diagnosis, for the first time she “saw empathy, real empathy”. However, she has since had to give up her work because of her deteriorating symptoms.
After her diagnosis, Susan was referred to the pain clinic and said “...they taught me a great deal, how to help myself”. Her husband, children and mother-in-law have also been a great support – “I don’t think I would have been able to cope without them”. She also feels that her faith keeps her going.
Susan joined a fibromyalgia group on Facebook in the past. However, she didn’t feel it was what she needed and so left – explaining that “I need positivity”.
Her advice to other people with fibromyalgia would be to “take each day as it comes”.
One day at work Susan describes suddenly starting to feel very unwell, like she was getting a “24-hour bug.”
One day at work Susan describes suddenly starting to feel very unwell, like she was getting a “24-hour bug.”
I’ve had pains, swellings for about maybe ten years, but because I was so active, a lot of the times I thought it was simply because of maybe I was walking too much, maybe I’m overdoing it, and okay, maybe I need to icepack, rest. Or maybe my ankles are just big, you know? All of these different things, and I kind of ignored it. I would take maybe a tablet here, a tablet there, then I just got a bit worse. But one day I was at work, I’d just finished seeing a patient and I left the patient’s house and I kind of noticed that I wasn’t feeling great. I thought, “Oh, I’m getting a 24-hour bug,” carried on, went to see my last patient. And my last patient remarked, “You should be in bed, you should not be at work,” so I said, “Yeah, I know, I’m just suddenly not feeling well, I think I’m getting a bug, so after you I’m just going to go home.” The Tube station from her house would normally take me about five to seven minutes; it took me over half an hour to walk to the Tube station. I was just like, I am not well, I know I’m not well. That’s all I could say, it was like, I couldn’t think of anything else. I got to the Tube, sat on the Tube and can’t tell you what happened after. I literally went into such a deep sleep that when I got to my station, the guys who pick up papers on the train actually [touched] me and said, “You’re at the last stop, the train’s not going any further, you’ve got to get off.” And I kind of got up quite dazed, you know like, “What?” and I struggled up the steps of the Tube station to get to the lift, got on the bus, got home. And promptly rang my husband and said, “I’m not well, I’m just going to be in bed.” I rang my office and I said, “Listen, I’m, I’ve just come home because I’m just not well,” and they said, “Yeah, you didn’t sound well when you kept checking in with us but you know, we thought oh maybe you’d just got a cold or something and we didn’t notice it in the office.”
The next morning, I got up to go to work, got up and literally fell back on to the bed. What is this pain? Why am I in so much pain? My head felt like it was exploding to begin with, my back hurt, my hands hurt, everywhere is just like… just this pain.
Susan describes the specialist she saw as being “very honest” and “transparent.”
Susan describes the specialist she saw as being “very honest” and “transparent.”
I went back in three months and I saw another arthritis consultant and I was very pleased with him because he was very honest with me, he said, “Listen, you have been diagnosed with fibromyalgia, we have diagnosed you with…” is it negative… seronegative arthritis. “But from what I’m seeing, arthritis is not your problem. The fibromyalgia seems to be the most top thing and because of that, I can’t help you. I’ve got nothing to help you, so I’m not going to pretend that I can help you and I’m not going to get you to come back to see me with the pretence that I can help you, so I’m going to sign you off and ask your doctor to maybe get you into the pain clinic.” I thanked him because someone wasn’t treating me like I was an idiot but was actually being real with me.
Just someone telling me the truth. Just telling me the truth is enough for me. It’s enough, because I’ve had so many consultants, different consultants, nobody can give me the answer, you know? I’ve had five allergy tests; no one can give me the answers. And someone was able to say, “We can’t help you. We know what it is, we don’t know how you got it, but we can’t help you,” that’s just enough for me. Instead of him saying, “Well, hmm, how are you feeling today? Oh, you know, where are the parts that hurt the most? Mm, mm, take a warm bath, get some rest, take some tablets, and we’ll see you in three months.” He didn’t do that; he was very honest. I love that, I love the fact that he was – I mean, he just stood out as… for me, integrity is important and that stood out for me.
So when you say “integrity”, what would that compass, or what would be that looking like?
Someone being transparent, someone being honest, someone who is able to stand upon their professional word and say, “This is where we’re at, but unfortunately…” that’s integrity. Instead of doing the flim-flam you know?
Over the years, Susan developed swellings in various parts of her body.
Over the years, Susan developed swellings in various parts of her body.
Well, other things have developed over the years. Swellings under my skin, lumps, hard lumps that have to be massaged. I’ve had a tennis elbow for the last five years, the soles of my feet, it’s like golf ball-sized lumps. My hands are swollen still, my jaw it has got worse… I have to literally… if I don’t speak for half an hour, I have to put my fingers in my mouth to push open my jaws, to just allow me to even get a fork or a spoon into my mouth. My key, my dentist is still not able to treat me. And then Covid-19 happened and the hospital is not able to treat me, so I still have touches both jaws with left hand] cavity where one of my teeth just died, the roots just died. And my tooth seems to be breaking and no one is able to give me answers yet as to why. Those symptoms I think have increased. The headaches have increased, they come on… I used to have, I sort of normally have a low-grade headache, but occasionally there will be a spike out of nowhere, just a spike that can last for three or four days. What else? My knees have gotten worse and my ankles – I can no longer wear heels. I love heels, speciality four-and-a-half inches because I’m short. I’m at the point of selling my shoes because I literally can’t wear them. I can’t wear my long dresses because I’m tripping over them, I trip over my feet at the slightest thing. I have what I call the power-down, I’m walking and suddenly, like a car without any petrol, I come to a standstill and I can’t move. So, I call it the power-down, it’s my word, you know? I just power-down and then I have to wait to get some petrol back in the tank to move again.
Susan thinks her “greatest tablet” is her family.
Susan thinks her “greatest tablet” is her family.
But the whole system doesn’t quite understand this thing. I mean, there are people, you know, teams, your teams and other teams trying to gain a better understanding to help us to help ourselves, and I suppose in the long run, that is what it will come down to. It’s getting enough information to help ourselves, because nobody truly understands what you go through on a day to day basis. I’m much more open with my family and they do understand. My husband and children, I, they have been a great support to me. I don’t think I would have been able to cope without them.
So, I was finally diagnosed in 2015 after a period of about 4-5 years, running to have lung function tests, MRIs, scans, injections here, there, bloods, week after week after week after week. All the tablets, “Just take an aspirin.” I think my greatest tablet is my family. My family That’s it.