New angry and afraid

[daalan]

Are there tricks people have found to calm down extreme flares?

For some background, I was diagnosed with fibro a 3 days ago. It started 3 weeks ago the day my sister died. Obviously my issues are stress induced. It started out feeling like a sunburn all over my body. It has now progressed to a numbness and a feeling of extreme nerve firing, numbness, and weakness everywhere. The fibro fog I have been reading about seems to be kicking in for the first time as well. Today is the worst is has ever been. My panic attacks are not helping. I know stress reduction is the key. When I calm down it feels better, but my pain is still really bad. My doctor has me on some anxiety medication, but it seems to be too early to be having any effect. I have been reading a lot of the posts and it seems that fibro is different for everyone. I am just wondering if there is anything I can try to have some "short term" relief. Also to note, I had an MRI and several tests. On paper I am very healthy, yet I am more miserable then I have ever been in my life.

 

[cookiebaker]

Hello, and welcome.

I had an MRI and several tests.

there are a LOT of things that can have similar symptoms, so it is very important to rule out other things that could be causing this pain you feel. Getting a fibro diagnosis in just 3 weeks seems a bit rushed to me.
It took several months (nearly a year) of actively pursuing things to get my diagnosis by ruling other things out one by one... things like Lupus, Lyme Disease, MS, Rheumatoid Arthritis, and many other things that have similar symptoms, but also have effective treatments.
For a lot of people, it can take several years to get a fibro diagnosis.

Not trying to say you dont have fibro, only that your diagnosis was pretty fast compared to most.

As you are already finding out, there are no "quick fixes" and everyone is different in how they are affected.
Stress is definitely a big factor, as is getting enough sleep.
The best advice I can give is this - try not to think about it - constantly thinking about it makes things worse... keep your brain occupied with other things. Dont spend a lot of time comparing your symptoms to others.
Yes, educating yourself is a good thing, but, spending too much time thinking about it is not good. Focus on good things.. things that make you feel better, not on the things that make you feel worse.

As for medications... anti-anxiety/depression meds can often take up to a month to become helpful. And for many of us, they dont help at all, or sometimes cause unwanted side effects that make things worse. Again, everyone is different, so you need to find what is going to work for you, and that is going to take time.

Being as how this all started with the traumatic thing of losing your sister, I am also going to suggest that perhaps it might be a good idea to find a good counselor to talk to. A counselor can help you find appropriate ways of coping with the grief of her death.

 

[sunkacola]

@daalan , I agree with @cookiebaker that this diagnosis has come far to quickly. Fibromyalgia is not properly diagnosed unless the symptoms have persisted over quite some time. At least many months, or even years. Part of the definition of fibromyalgia is widespread persistent pain that has lasted for a long time.

Feeling this way three weeks after such a great loss, the symptoms are far more likely to be caused by grief. Serious grief can cause a whole lot of things, including brain fog, physical pain, and all of the other things you are experiencing. I know...I have felt that.

I strongly urge you not to take the diagnosis you have been given to heart. It is actually much more likely that you do not have fibromyalgia than that you do. Frankly, I don't think that doctor knew what they were talking about.

And, as noted above, there is a whole group of other things that can cause similar symptoms to fibro. One of them is, as I said, grief. And that is temporary. Not that the grief or loss is temporary, just that the physical manifestations of it are temporary.

It is vitally important that you get tested for the other things that could be causing this, IF it continues for more than several months. For the majority of people, a diagnosis of fibro is not given unless it has been persistent over some time and all of those tests come back negative, and there are a whole lot of those tests.

My guess is that you are having an extreme stress reaction due to grief, and that is the thing causing your issues, not fibromyalgia. You can approach this many ways, as cookiebaker says. A grief support group would be really good, and you may find others who are also suddenly experiencing physical symptoms like yours due to grief. And as you know the reduction of stress is very important. In your situation I think that the anti-anxiety medication is probably going to do the most for you. I do not normally recommend medication as a first thing, but to take the edge off your stress makes sense here. I would be surprised if it didn't cause your physical symptoms to ease up and eventually go away once it has had time to really get into your system.

Brain fog is very, very common with grief. When my partner died I couldn't think straight for months. Forgot everything, couldn't answer people's questions, would just stand there and stare at nothing, and so on. And I had a lot of physical pain that eventually went away.

Approaching what is going on with you as a result of grief is important to you psychologically and emotionally. Do your best to stop thinking of it as fibromyalgia at all, and instead just focus on taking really good care of yourself and giving yourself a lot of room and time to grieve in whatever way is best for you. Really be good to yourself. There's no right or wrong way to do grief. Just let it move in and through you as it will.

Please accept my condolences on your loss, and feel free to stick around this forum if you want to because many of us have had terrible losses in our lives and are happy to do what we can to help you with this.

 

[JayCS]

Are there tricks people have found to calm down extreme flares?

For some background, I was diagnosed with fibro a 3 days ago. It started 3 weeks ago the day my sister died. Obviously my issues are stress induced. It started out feeling like a sunburn all over my body. It has now progressed to a numbness and a feeling of extreme nerve firing, numbness, and weakness everywhere. The fibro fog I have been reading about seems to be kicking in for the first time as well. Today is the worst is has ever been. My panic attacks are not helping. I know stress reduction is the key. When I calm down it feels better, but my pain is still really bad. My doctor has me on some anxiety medication, but it seems to be too early to be having any effect. I have been reading a lot of the posts and it seems that fibro is different for everyone. I am just wondering if there is anything I can try to have some "short term" relief. Also to note, I had an MRI and several tests. On paper I am very healthy, yet I am more miserable then I have ever been in my life.

Hi daalan, and welcome!
You mean it was an extreme flare of fibro that started 3 weeks ago, right?
Stress reduction will not be the only or even the main thing, but if it seems to be the key at the moment, then I'd prioritizing it, and maybe there's a lot more you can do?
And if you do that, praps some of the pain (= severe whole body Ache?) will subside more too.
How are you working on the the panic / anxiety and stress?
Mine was basically all sorted out, deepened several times, before fibro started,
but concentrating on intense body relaxation, esp. jaw, using NSDR / Yoga Nidra to substitute sleep and augment daytime relaxation, and increasing my use of radical acceptance and ACT were things that still helped. Dunno about surprise panic attacks, but mine were always triggered by imagined films of past and future. Increasing mindfulness of the Here and Now, practicing that "most of the day", helped. I've always had difficult with normal meditation and progressive muscle relaxation, and autogenics funnily helps me mostly when I do it with others than using it on myself, but NSDR integrates many different relaxation methods and it normally being guided helps my wandering mind concentrate.
For "miserable" I can offer the hope that I would say I've now developed a new life and mindset that makes me happier than ever before in my life, but the metamorphosis isn't easy and needs proper grieving. Is that what you praps mean in your thread title with "angry", sort of a mixture of angry, denial, sad, afraid? That'd all be normal, but knowing that these are stages of grief about our old life may help us let go, radically accept and then build up motivation for a life under these new premises (which have to be found out and tackled all along and will continually change...).

 

[sunkacola]

You mean it was an extreme flare of fibro that started 3 weeks ago, right?

perhaps @cookiebaker and I misinterpreted, but @daalan started the post by saying they were diagnosed 3 days ago, and that it started 3 weeks ago. Daalan, please correct us if we got it wrong!
If you were experiencing a lot of widespread pain for a long time prior to your sister's passing, and it has gotten worse in the past 3 weeks, then of course it becomes more likely that you have fibro. Cookiebaker and I were assume the symptoms only started three weeks ago.

 

[daalan]

Thank you for the feedback. My symptoms did start three weeks ago and I was diagnosed 5 days ago. It is good to know that this diagnosis is likely premature. After I wrote this on Monday the pain became unbearable. I ended up going to the emergency room. Once again all tests came back normal. I have found the comments here about not thinking about it and keeping a good mood to be working. I have managed the last couple days by letting the pain come and not reacting to it, just letting it be. This has kept it from getting out of control like it did on Monday. I very much know that this is stress induced and am hoping it goes away. I feel like I am not grieving anymore, but the symptoms only seem to get worse. Maybe I am just kidding myself. I have been counseled to meet with a therapist. That should be starting next week. I think the biggest takeaway from everyone is to relax and wait this out before I take a diagnosis of fibromyalgia. Thank you to everyone. These replies have been very helpful.

 

[JayCS]

good to know that this diagnosis is likely premature.

Nope... it's plain wrong: all criteria define fibro as being widespread pain and more of at least 3 months!
It will be fibro only if you have that amount of symptoms in 3 months, and that will not then mean that you had fibro now, altho it's a bit pointless thought. Important to know if the pain has only been severe that short, then you can get much more of a handle on it, by increasing your counter-measures and taking it seriously. This will be a "prognosis" of the severity. I think if I'd've stopped pushing thru working hard my fibro wouldn't have got this severe in the first place. But even if someone had come from the future, I don't know if I'd've believed them. So let's see if you can believe us... ;-)

I have found the comments here about not thinking about it and keeping a good mood to be working

Again: Great, keep at it!

 

[CakeLady]

I would suggest that you find a doctor that is very thorough and a good diagnostician. Read up on Fibro to see what the diagnostic parameters are, as in the location of tender points. As far as dealing with the pain, it is helpful to keep yourself busy with something that distracts you from the pain. There are only so many pathways to the brain so if you keep it on other things, it will help. If you don't have a hobby, get one. I do cakes, cookies, and crafts for my family and friends and I also do a lot of reading. When I'm working on a project, I'm not thinking about my pain. Get some rest and pace yourself. Also, my faith is what truly gets me through. Jesus is walking right along side me on this journey and He gives me comfort and consolation. He has taught me to join my suffering with His suffering on the cross for the redemption of the world and for individual needs of other people. It gives value to anything that you suffer. Also, you are still in the grieving process. Allow yourself the time to grieve properly. May the consolation and peace of Jesus Christ and His Holy Spirit be with you in this journey. God Bless!

 

[JayCS]

Read up on Fibro to see what the diagnostic parameters are, as in the location of tender points. As far as dealing with the pain, it is helpful to keep yourself busy with something that distracts you from the pain. There are only so many pathways to the brain so if you keep it on other things, it will help. If you don't have a hobby, get one.

Yep, I do basically agree with your thoughts!
However tender points have long been tossed overboard (and their location was always pretty irrelevant), the main criteria in use today, the ACR 2016 criteria, add up points of how widespread our pain (WPI) is and how many and how severe 6 further symptoms we have aside from pain (SSS) - >3 months.
Distraction can be a help, but only if we have our self-care under control, keep to our sweet spots and calculate overdoing it so that the backlash is tolerable. I've had to change hobbies - taken up gardening...

 

[sunkacola]

I would suggest that you find a doctor that is very thorough and a good diagnostician. Read up on Fibro to see what the diagnostic parameters are, as in the location of tender points.

A word of caution: The "tender points" way of determining fibromyalgia is not something that any doctor familiar with fibro ever uses. The value of that has been thoroughly debunked, because all people with fibro have places on our bodies that hurt if pressure is applied. However, those places usually move around and are not consistent in how badly they hurt. So if a doctor tries to use that pressure-point test, you know that you have a doctor who is not fully versed on fibro, and may not give good advice.

 

[Nan]

Hi Dalaan my mum died in 2000 and it hit me like a brick. I hit rock bottom and at some point after I started with what I thought was flue symptoms but bad symptoms. This went on for a few weeks and all blood tests were normal but that was how I started after many tests I was diagnosed with ME and after I don’t know how long I started with pain and every symptom under the sun. All I suggest you do is take each day and symptom as they come but don’t worry or think you’re going mad. Learn to accept your illness and keep in touch with the forum for support and suggestions. Take care of yourself and don’t fight your symptoms. Best wishes. Nan xx

 

[johnsalmon]

The "tender points" way of determining fibromyalgia is not something that any doctor familiar with fibro ever uses.

they found that a high percentage of people without fibromyalgia found these point tender

 

[sunkacola]

they found that a high percentage of people without fibromyalgia found these point tender

Not surprising, especially as, at least in my experience, they tend to press pretty hard on those "points".

 

[Badger]

@daalan condolences for your loss, my own sister passed a couple of years ago, it's a stressful time for you and must feel overwhelming. The likes of Yoga Nidra mentioned above are worth regular practice. Non Sleep Deep Rest protocol found on YouTube are similar.

I had the tender point test once in the past with a specialist that had an awful attitude. He bluntly told me according to the test I did not have Fibro. It was one of two occasions I ended up arguing with him. He had a fellow patient of the pain clinic in tears. One of the only helpful doctors at my local surgery didn't agree with the tender point test. To be fair to him, he felt Fibro patients were more likely to be sore after being poked and prodded.