My diagnostic journey
I can remember quite vividly being newly diagnosed with fibromyalgia back in July 2019. I had been suffering for many months with constant pain across my whole body, following completing The Manchester Marathon. At first, it started out with just leg pains, which I put down to the marathon, but by the time I received some physiotherapy for this, the pain was now wide spread and they could not do anything for me at this appointment. So, the doctors ran further blood tests and I had lots and lots of appointments to try and see what was wrong with me.
In the meantime, I began doing my own research and eventually came to the conclusion that I had this thing called Fibromyalgia. I began doing lots and lots of research of my own and was eventually referred to Rheumatology who confirmed this diagnosis. I was now newly diagnosed with fibromyalgia! Although it didn’t come as a shock, I was still left in the dark with this. I was given a leaflet and the advice to “not get into a wheelchair as I’d never get out again” and given a follow up appointment with the rheumatology physiotherapy department. Then I was discharged into the big, wide world. I felt all alone and felt as if I was just left to fend for myself. So today, I’ve decided to compile a list of what to do when you are newly diagnosed with fibromyalgia, hints, tips and tricks I have picked up along the way and words of wisdom to see you through. I need you to know you are not alone in this!
What to do after newly diagnosed with fibromyalgia
- The first thing I would do is make sure you have an appointment with a physiotherapy department, preferably who specialise in chronic conditions like fibromyalgia. They can give you useful stretching advice and plans paced to your condition and at a level that feels comfortable for you.
2. I would also make sure you request to have an appointment with an Occupational Therapist who can look at activities you find difficult and help you to develop a plan towards them. For example, my OT gave me hand splints that are useful for me to use when my hands hurt or when carrying heavy loads. They can also offer pacing advice and offer practical adaptions to help you with your daily living.
3. Furthermore, I would conduct your own research about Fibromyalgia using reputable websites such as the NHS or FMA UK. These have useful links on for the signs, symptoms, self management and self care activities you can undertake now you have this condition and also the FMAUK provides booklets for employers, family and friends and doctors surgeries to help inform them further on this condition. They also have a helpline you can telephone which I did recently when I felt in a fibromyalgia crisis.
4. Some people find it helpful to join online support groups on Facebook or in person groups if there is any in your area. However, for me personally, the Facebook groups were too negative for me which is why I started this blog to try and bring some positivity into having this illness. You may find it helpful but make sure if they are getting too much for you that you disengage.
5. Keep a regular dialogue with your local GP. You may wish to consider medication but as I am not medically trained I cannot advise in this area but by making regular contact with your GP you can discuss a treatment plan and keep an eye on symptoms old and new.
Mummy the Fibro Warrior Top Tip:
- Even though this illness is chronic and can be debilitating I need you to remember that it is not a life sentence. You can still live your life with this condition, be a parent, breastfeed, powerlift or anything else you wish to do! Take it slow and steady and come to terms with your new diagnosis. Grieve if you need to but then find a way forward.
If there is one takeaway I’d like you all to remember today is that living with this condition is hard but with the right treatment plan, support around you, positivity and self management you can life a normal life. I need you to know you are doing the best you can, your child/children love you just as you are and you are Mummy the Fibro Warrior.
Until next time,
x
p.s. What advice would you give to someone who is newly diagnosed? Do let me know in the comments below and share your wisdom.
[…] are making shared decisions. I have learnt over the years that one of the key ways to manage my fibromyalgia is through self management like pacing, resting, napping, reducing workload, reducing stress and […]
I was diagnosed about the same time as you but I cannot get my wife to understand me. And the man we care for is manipulative and awkward so we have to do everything for him doesn’t matter about us
Thank you so much for commenting. I am sorry for the delay in responding as I haven’t been on my page for a few days. I’m sorry to hear that. Perhaps showing her some of my articles might help or FMAUK page has information that you could share with her? Try to find your support network; if that’s through reading my blog page or Facebook support groups or FMAUK. You are never alone in this.
Keep a diary! And take time out even if it’s 10 minutes to use a mindfulness app! It works wonders
Thanks so much for commenting! Sorry for the delay is replying. I haven’t been on my site for a few days. In what way do you keep a diary? Is this a symptom diary? Yes I need to get better at meditating!
I’d say;
Be kind to yourself, you are not to blame for having fibromyalgia, it can and does happen to anyone.
There is a BEFORE and AFTER of fibromyalgia.
You are still a capable, switched on person as you were before…..however, now you have fibromyalgia you need MORE energy to do LESS than before.
Pace yourself, set timers to stop the task you are doing and switch off for a while.
Pacing yourself is not being self-indulgent, it is self-preservation.
Learn to listen to yourself, both to your mind and your body and learn a new way of living.
Eat healthy, clean, simple, fresh food, avoid processed foods and food additives. Read food package ingredient labels.
Drink water, lots of water.
You will do all of these things and you will still have brain-fog and total exhaustion some days….but just remember that if you skip self-care you are sabotaging yourself and it will take longer to get back to anything approaching “normal”.
Everyone of us is different in the way fibromyalgia affects us, our families and our lives, just get to know your particular brand of fibromyalgia and your own triggers.
Be honest with friends and family and say when you can’t do something they want you to do, otherwise how will they learn the new version of you?
Good luck.
Sometimes living slowly can improve your life.
This is such good advice! Apologies for the delay in responding as I haven’t been on my site for a few days! “More energy to do less than before” is such a strong statement. I definitely need to drink more water. How do you remind yourself to do it? I still need to get better at self care but I’m getting there slowly!
Thank you so much for writing on this page . Like you I was diagnosed with fibromyalgia in 2019 I had experienced pain and fatigue etc for sometime and I was working as a nurse . I had not really heard of fibromyalgia and it wasn’t until I saw a patient in my clinic who had it that I started to think I too could have this condition. So I started to research it went back to my GP who did lots of tests and referred me to a Rheumatologist. The wait on the NHS was too long so I paid privately to see someone. This is was when I was finally told that I definitely had fibromyalgia . It was such a relief at the time because I just didn’t know why I was feeling like I was. Since then I have gone through a lot of emotions and I suppose a grieving process. I have now retired from nursing. I think the key thing with coping with this condition is to pace yourself . Keep active accept that there will be days that you need to rest and maybe have to sleep when the fatigue is so bad . I find that doing meditation and headspace is good for my mind too . It is very hard sometimes to cope with the symptoms and I think sometimes that because it isn’t that well known to others you find yourself having to explain yourself. But like you have pointed out we are not alone and it is good to know that there is support out there reading what you have posted has really helped me . Thank you
Thank you so much for your kind words. I am sorry for the delay. I haven’t been on my blog for a few days. Wow that must have been tough working as a nurse. It really is a grieving process isn’t it. This has really made my day that I have helped you. Are there any particular activities you do to keep active? I’m a powerlifter and this really helps me but due to an perianal abscess I am not able to do too much at the minute and boy is my body feeling it. I feel so much worse when I can’t exercise.
I try to pace myself, it’s hard some days but if you know that you have to be kind to yourself and give yourself permission to rest when you can. Stress makes everything worse, so I try to read or craft to take my mind off of things. My children flew the nest ages ago so I don’t have young ones to care for now, but, my husband is ill and it is hard caring for him when I have flare ups, other days we muddle through together!
Thank you so much for commenting! I do apologize for the late reply as I haven’t been on my page for a few days. Well done for pacing yourself. It can be so tough. I’m a crafter too! I sew and do jewellery making. What do you craft? I am so sorry your husband is ill. I wish you both all the best. xxx