been a while since I wrote here, thanks to those who’ve replied back then,
I’ve been diagnosed with ET jak2 in June 2019, been on anagrelide since July 2021 and am facing a situation where the medication already doesn’t work any longer. We’re discussing other option with my haematologist in about a month. I can’t say enough how happy I am with the health team at the mater hospital in Dublin, Ireland. They’re very very good.
but what I had been experiencing as symptoms: generalised pain in the whole body, headaches and migraines, fatigue, etc came out to ALSO be coming from another diagnosis . I had an appointment with a rheumatologist at the Mater today as well that diagnosed me with a fibromyalgia. I read more and more about it as they day went and indeed I can totally relate to the symptoms.
I was positive when receiving the diagnosis, there are pain management plans and will be put in place for me as well, but I’m in a low phase now. 2 diagnosis in such short period of time, I feel like it’s a never ending story and what will come next ? What has my body secretly prepared again?
Have other MPN patients experienced being diagnosed with fibromyalgia as well? How do you cop with 2 chronic illness ?
I’m only 35 years old, I just want to have an easy life
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Maella
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While I do not have fibromyalgia, I have had s few co-occurring health conditions (NF1/Brain Tumor, arrhythmia/heart surgery, etc.) on top of the PV. Life can be quite interesting at times. Interesting enough that I told my care team that my goal is to be "The World's Most Boring Patient." Alas, that goal remains elusive.
Broadly speaking, ensuring collaboration between the different parts of your care team is the core on managing multiple conditions. The collaboration does not happen on its own. You have to take an active role in ensuring that it does happen. You do need to be your own care manager and ensure that you receive holistic care from all providers.
In terms of coping with multiple conditions, we all have to find out own ways. Here is my list.
1. Support from my family, friends, and faith community.
2. The forums I participate in (my friends and MPN and NF Families)
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the medical conditions.
I have led a long rich life and plan to continue to do so despite what happens with the NF1/MPN. Sure, there have been some challenges with the NF1/MPN and the other related and unrelated medical issues I face. Sometimes you do, as the military folks say, have to "Embrace the Suck" or just "Suck It Up Buttercup!” However, it is not all "Suck." There is plenty of good in life to enjoy and embrace. As the prayer says, I seek the serenity to accept what I cannot change, courage to change what I can, and wisdom to know the difference.
More than anything else at this point, know that you can manage this. There are ever-more treatment options and very real hope for treatment improving in the foreseeable future. Have confidence that you will be one of many who do manages the conditions(s) successfully.
hunter5582 as always thank you so much for your message, I was very overwhelmed and angry when I wrote it, as soon as I read your response I felt like comforted , so thank you I’m very sorry to hear your additional diagnosis but I’m so impressed by your way of viewing life as always
I also have ET (I am 77 yrs old) diagnosed 3 yrs ago. Was prescribed other drug first of all but it didn't agree with me (Hydroxy)!
Have been taking Anagrelide for 3 years and now am only taking 1 one per day as platelets are now down to 250. But I have bleeding problem (or so Haematology consultant thinks).
Before I had ET I had Bowel Cancer 2015 clear of it 2020. But now BC could be back-we don't know until I have endoscopy next month. I was asymptomatic with ET-never noticed it. I am not a calm person - do have anxiety. Just try to think about other things (I am lucky am retired). Live by the sea in E.Sussex.
Hope you will find a way to cope -expect you have family to help overcome anxiety.
I have triple negative ET, diagnosed about 18 months ago and I also have Fibromyalgia, I’ve had symptoms for about 15 years but only diagnosed 3ish years ago. They discovered ET while testing me for everything else under the sun(usual story with Fibro🙄) I’ve been meaning to ask people in this group about having the 2 together… but keep forgetting! Fibro fog is a nightmare.
I think my fatigue is so bad as I have a double dose of it from both conditions.
I’ve had to give up work recently as the struggle was too much along with an under active thyroid and a couple of other conditions too. I get pretty down about things, and feel like giving up at times but, keep going for my daughter. She is my absolute rock and also needs my support at times. Having 2 chronic conditions isn’t easy, but things could be worse I suppose!!
I was initially diagnosed with ET but a BM B revealed it changed to PV it also revealed I had low grade lymphoma. All this was diagnosed during the pandemic . Added to the above I have recently been diagnosed with poly myalgia rhumatica and am currently on a reducing regime of predesalone. I found it difficult initially to cope with all of the above as I was diagnosed with all of them almost one after the other but now I try and apply the mind set of accepting what I cannot change and focusing on all the good things in my life of which im lucky to have as many as I do. I do have down days especially with the polymyalgia as theres a risk of it developing into another condition: giant cell arteritis which can result in permenant blindness and tbh this terrifies me and causes me a lot of anxiety but im doing everything I can to monitor that so I can do no more.
Keeping occupied has helped me it stops me dwelling on things and as Hunter put in his list if coping strategies I try to surround myself with positive things that lift me up and defiantly a sense of homour.
very sorry you’re going through all of this Camelian , indeed the coping and acceptation come with time, 2 days after second diagnosis I’ve moved on from the angry and denial phase to slowly acceptation. It’s always a process that takes time to know where you stand is good. I was indeed very overwhelmed and angry when I wrote this message, I appreciate you took the time to respond !
Hi, Maella, I was diagnosed with fibromyalgia in my 30s. At the time, my doctor called me to do physical therapy which helped. I continued to do exercises at home. Also, changing your diet to foods that do not contribute to inflammation like reducing sugar and carbohydrates, and eating more fruits and vegetables helps. I was a special needs teacher at the time but eventually I had to leave that position because it was difficult for me to be in my feet all day.
I was diagnosed with arthritis in my 40s in both my hips and then at age 52, I was diagnosed with Et and then post Et Mf at age 63.
In spite of all this, I have led a full life. I raised two wonderful children, changed my profession where I could work my own hours, and basically learned how to pace myself and manage my conditions. You will find a way.
hi, there is also a forum for folk like us with Fibro on healthunlocked.com it’s worth a look as there’s lots of information and support from people dealing with the same condition 👍
very interesting… just found this. . I have ET with jak 2 and found the question about fibromyalgia interesting because I have been having new pain in different parts of my body and extreme fatigue as well as on going “brain fog”. Definitely going to ask my doctor about it at my next appointment. Hopefully she will take me seriously. Can’t imagine having both. ET is bad enough by itself.
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I’m very sorry to hear your additional diagnosis but I’m so impressed by your way of viewing life as always 
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