Newly diagnosed in a global pandemic and lockdown...

charr

New member
Joined
May 28, 2020
Messages
2
Reason
DX FIBRO
Diagnosis
04/2020
Country
UK
Hi all,

I'm a (very) new member, having joined today, and am hoping for some advice. I'll give you the context leading up to where I am now, if that's OK.

I began having pains in my wrists, hands and arms in January 2020. My GP thought it was Repetitive Strain Injury (RSI) and I was told to rest my arms for two weeks, as my admin job seemed only to be aggravating my pains. I was also getting very intense headaches, again I attributed this to the poor lighting in my office and overuse of computers.

Only one week into my arm rest period, I started to get very similar pains in my legs. Then my back. Then my abdomen. My neck. My feet. It was everywhere very suddenly. My doctor proceeded to try me on three different types of medication, with varying doses - none of which helped with my pains and all gave me nasty side effects. I was referred to an osteopath for acupuncture which I had two sessions of before Covid-19 stopped all clinics, I'm a little bit thankful as I found the acupuncture became more painful each time I had it as my symptoms worsened...

I was diagnosed with fibro in April (just over a month ago). So, please bear with me. I am very new to all this. At the point of my diagnosis, the UK-wide Covid-19 lockdown had ensued, and I was advised by my GP over the phone that the pain management clinic she would normally refer me to isn't open, and that she can't make any referrals at the moment. She told me to call back in 6-8 weeks.

As the medications my GP tried me on very soon into my pain journey were ineffective, I am not currently on any medication. I'm beginning to think this is a good thing, and that I should strive to find a comfortable life without any medication muddling my brain anymore than it is.

Since January, my symptoms have come to include: constant aching throughout numerous areas of my body, less constant burning pains and shooting/stabbing pains throughout my body, headaches, insane bloating and weight gain (though my adorable husband assures me I'm not gaining any...), 'fibrofog', loss of memory, difficulties with speech, weakness all over and tiredness.

As someone who has always been incredibly active, dynamic and busy, I now find myself barely able to walk. At the age of 26, this is quite the shock to me.

So there's the context. I guess, what I'm trying to find out is.....

What are you all doing to manage your pains and symptoms during lockdown when pain management clinics and other services aren't running?
Do you find yourself relying on services like these when they are running? Are they useful?
Are you managing to cope with your symptoms during lockdown?
Or are you finding this much the same as normal for you? And you have to take each day as it comes?

I'm waffling somewhat, and with my newfound difficulty organising my thoughts and what I'm trying to say, I'm not sure this makes sense.

I hope some of you will be able to decipher this and share your thoughts and any useful tips you have with me.

Thanks x
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
164
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Welcome!! I was officially diagnosed in January and for me it was a bit of a relief to have a diagnosis. I tried 2 meds that did nothing for me. I currently take no prescription meds for Fibro. I am focusing on trying to live with this new normal and take each day as it comes. The pandemic is stressful but I dont focus on all the negative. I was working full time but my hours were cut in half do to Covid and that is frustrating but I decided to not let it get my down because at least I am still working :) Sounds like you are experiencing alot of what Fibro does to our bodies, and like all of us you will need to find your sweet spot help. Its a constant learning process but staying as positive as possible it key. I am still working on figuring out what works. Just knowing we are not alone is the biggest emotional relief! This forum has helped me alot and I hope it helps you too! :)
 

Fatima

Member
Joined
May 31, 2020
Messages
23
Reason
DX FIBRO
Diagnosis
10/2019
Country
CA
State
ON
I sympatize with you, its bad enough to have all your health issues, Covid-19 threw us all for a loop.
I have had Fibromyalgia for a year. It came on suddenly and very intensely, I spent most of last summer in bed. The pain and fatigue were all I could manage. I started to research and seeing Dr's at the end of summer and was diagnosed in Oct. although I did not accept the diagnosis until I started looking at resources outside of Canada. I don't think there was one thing that helped me improve but a combination. I hired a fitness trainer to work with me individually and was lucky that he provided zoom training during the shut down. I started B12 shots and that improved my fatigue, but when the pain gets worse, I still get fatigued. As the covid imposed isolation started, I decided to take control of my well being during this. I am still learning to meditate, I started low impact Yoga and also discovered Qi-Gong yoga which includes tapping of the muscles and I think helps a bit. I survived without the assisted services that I was getting before. I was seeing a naturopath and a physiotherapist before. I am still hoping to be pain free someday soon but for now I am managing. I do not take any drugs but have been working on supplementing, this is a life illness that you need to learn to manage if you can.
 

AnnaOK

New member
Joined
May 13, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
00/0000
Country
UK
Hi there! I’m very similar to you... elbows were first and my GP diagnosed Tennis elbow and told me to rest... then the other symptoms kicked in. I finally got an appointment with a rheumatologist who said it ‘could’ be fibromyalgia but he needed to do follow ups to confirm... then covid hit. So I’m still officially undiagnosed but I’m pretty certain!
In terms of management, I’m very adamant that I don’t want to go down that road and want to try to manage- most days. Some days when I can’t move I have other thoughts.
i do yoga every morning that I can (as much as I can) and try to meditate when I can’t stretch. Hippy dippy nonsense but it seems to help.
I’m learning to pace my life. I do what I can but some days I just have to take it easy- hard with two kids at home but they are also learning what I can or can’t do!
I’m hoping doctors will start doing non covid appointments (even via zoom??) soon so that I know what next but who the hell knows right now?
Not much help- sorry! Just know you’re not alone
 

Geeena

New member
Joined
Mar 8, 2020
Messages
9
Reason
DX FIBRO
Diagnosis
02/2020
Country
UK
hi there! welcome to the Club 🌸 use B12 shots from GP to improve my iron levels (ask if yours are low why they are low) a Tens machine (£20 online), CBD oil by Cibdol, stretching/pilates, daily meditation in a chair after breakfast for 5 mins, 15 mins longer if I can Walking. Hobbies like painting collage, crosstitch. Medication im on include Vit D daily, for nerve pain Duloxetine, Pregablin and v low dose of clonazepam to help with legs at night that have a life of their own ... Everyone has different fibro needs- You find out what works for you bit by bit. Im at my best when I can swim. 🌊 Sometimes I think the sea and sun ☀️ is all I need ! All the best
 

Jess98

New member
Joined
Jul 14, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
01/2020
Country
AU
Hi, I got recently diagnosed this year too and I've found through experience and recommendation from a good dr that take paracetamol and ibuprofen together is good because it hits 2 birds with one stone but obviously not to be taken all the time obviously but if you know when your about to have a big flare-up its good to have it before to help alleviate the symptoms a little, in my case anyway.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
816
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Charr, you just have to take each day as it comes.
The most important things are: getting enough of the right kind of exercise, eating very healthfully, getting enough sleep, removing stress from your life, having a positive attitude (meaning, accepting where you are each day and don't waste energy fighting it or being resentful about it).

Beyond that you have to experiment to see what exactly works for you when it is like this....then what works best when it is like that...and so on. I always advise people not to rely on prescription medication, most especially any narcotics because they can and will in time ruin your life. It's important to find a way to take charge of this for yourself so that you are not dependent on doctors or pills.

I use a TENS machine, heating pads, ice packs, stretching exercises,medical cannabis, a combination of ibuprofen and a muscle relaxant for some kinds of pain, and relaxation techniques to try to keep my stress and anxiety down. I also distract myself a lot with books, films, making art, and my animals.
The pandemic has turned my life upside down just like everyone else, and it sucks. The isolation is hard, but I also remember every day how lucky I am compared to millions of other people, who would probably kill to change places with me, even including the fibro. As bad as it is, it could be a whole lot worse.
 
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