Seriously questioning fibro /ME

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Boatsetsailrose

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Seriously questioning fibro /ME
« on: February 17, 2019, 11:11:01 AM »
Hi
For months I've thought 'do i have ME .
If i look back to about 15 yrs ago i had a severe flu and my energy never returned to what was after that. Following years of nursing and nursing burnout i went off work 3 yrs ago for 5 mths with mental breakdown  following trying to come off anti dep. It was then that my energy really dipped and i felt like i slept a lot of that 5mths.
I had another 4 mths off last year and finally let go of my career in sept 18.
For the past year I've suffered increasingly more severe  body aches, headaches (although had those years, tiredness that doesn't get relieved by sleep, increased mental fog, concentration and memory issues and exhaustion most days which increases the following day after exertion. I just feel like i want to sleep all the time. I have previously put it down to sedation from anti dep but now i don't think it is all attributed to that. Also i have increased sensitivity to noise and light to the point where i wear ear plugs and sunglasses.
A typical example is :
Woke this morning after 9 hours sleep feeling exhausted...not normal tiredness more well ....exhaustion . ( i went out yesterday did yoga and then meditation / healing session also did  some walking and got buses. Im now laying back in bed willing myself to get the energy to get up and do some things in the house. My whole body aches , feels both muscular and in my bones . this morning my hands hurt my arms my legs and feet . lower back aches and have some headache neckache.
Got IBS ongoing and the usual anxiety , depression as well as cptsd of course.
Poor me ! What a lot to.contend with ....
I remember a time long ago id bound out of bed ..
Any experience in these areas or thoughts people have id appreciate ...is it common to get fibro/ cf with cptsd ?
Im going to look at making q gp appointment next week...what do i need to look for in their assessments ? I read something about a pain test ?

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Rainagain

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Re: Seriously questioning fibro /ME
« Reply #1 on: February 17, 2019, 01:05:22 PM »
I have a friend with cptsd and fibromyalgia.

I've also heard somewhere that chronic pain is depression and vice versa.

So a GP visit is well warranted, it's pretty complex really.

Sorry you have all this to deal with.

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sj

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Re: Seriously questioning fibro /ME
« Reply #2 on: March 01, 2019, 09:24:34 AM »

I live with Fibromyalgia and ME/CFS and they are very debilitating. I have been scary sick through a couple of periods (eg; thankfully able to still toilet and shower myself and make tea and toast with aid of a stool in the kitchen.... lifting kettle with 2 hands, struggling to lift fork to my mouth ... but requiring significant support from others for other living needs/tasks) and extremely grateful that I seem to be in a subcategory that has dipped quite low yet been able to experience degrees of improvement. Some people don't, and some people have died (2 that I know of, and is very rare, but still) and it is not taken seriously enough. Pushing beyond body limits can result in very grave deterioration of condition, which is NOT WORTH IT. Respecting limits and resting is fundamental to management and hope of possible recovery.

For the record, my view of these in context of CPTSD is that they are distinct conditions, but that CPTSD will increase your likelihood of developing these conditions when exposed to other known triggers and stressors (ME/CFS is very frequently reported as developing post some form of immune event/ disruption .... my favoured line of research is that which indicates significant mitochondrial dysfunction - problems in energy production in cells and communication/ transmission of energy between cells .... but I also feel that it is important to recognise the CNS/ neuro-immunological components). Also, however, I think it is important to note that becoming significantly sick is a traumatising experience in itself - it can then be part of re-traumatising for CPTSD on a number of fronts. For me CPTSD came first, then I developed Fibro around mid 20s (I feel it relates to the way pain signals are mediated goes haywire and into over-drive neurologically as a result of prolonged stress), then ME/CFS after significant immune system injury at 30 (felt like something significant finally just broke or gave-way, but definitely with it's own cluster of specific symptoms). I have also experienced serious depressive and anxiety and dissociative episodes, etc. I feel very clearly what different things are and the deep, profound, physical exhaustion and uncomfortable physical malaise of ME/CFS is NOT depression - the depression is more reactive because of very real difficulty and limitation resulting from the other horrible stuff. They may all be related and play into each other, yet they are still distinct conditions with their own symptom expressions.

The place where they overlap, imo, is that all 3 involve neurological disruption. I stress, that is just imo.

Most Drs still know little and I would recommend trying to find online support groups where you can contact local people who can recommend someone from their experience - that can be a really good start, and easier if you are in a relatively well populated area. There are some good resources, including Dr lists, via some of the major advocacy groups. I would definitely go in with some level of advice form somewhere (I'm sorry I can't look for you now... If I can I will have a look for some links another time), and also just have your radar on for how you feel with whether or not you are treated with respect and validation. Hopefully experience with CPTSD stuff will form some basis of discernment for this.

Learn about the symptoms lists and especially the very key ones such as Post Exertional Malaise (PEM) [NB; this speaks to the fact that exertion - from excercise, house-work, to reading and talking will all worsen the condition when done beyond the current limits of the person .... doing stuff makes one more sick] and Orthostatic Intolerance (OI) [like a desperate need to be horizontal or have feet up ... standing or walking for too long causes physical distress, pain, exhaustion, faintness, weakness) , which do not occur in depression or most other illnesses. (I think there was an official effort in Canada to rename and redefine the diagnostic criteria, with new name being - SEID, or Systemic Exertion Intolerance Disease. It hasn't taken off, but it at least speaks to PEM. I went from being moderately debilitated to seriously and scarily debilitated because I did not understand this factor and tried to push myself too much.

In the end the best Dr is one that has some experience of ME/CFS and Fibro, who recognises it is genuinely debilitating and is not dismissive or tries to tell you it is just depression and that you should exercise more (NB; this advice is very bad and can be seriously detrimental to a person with ME/CFS). There are no clear treatments other than rest and managing symptoms, so if someone gets too pushy with a set treatment I see that as a red-flag. If a Dr is respectful and supportive and wiling to listen to what you need and discuss options with you carefully and respectfully, then you are doing well, imo.

I have written this quite quickly and have ended up writing much more than I expected to, so sorry if it is very rambling or too intense. Not sure if/ when I'll have a chance to look for some good references. I hope this at least a little helpful to you. I also hope I haven't scared you too much, but perhaps just enough to realise to take your symptoms seriously and prioritise self-care, just in case you do have ME/CFS, which I'm not in a position to say.

Really sorry you are going through all this - it's utterly horrid stuff. Doesn't help that it's yet another area that is poorly understood or respected.

tc




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Kizzie

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Re: Seriously questioning fibro /ME
« Reply #3 on: March 01, 2019, 05:25:22 PM »
 :yeahthat:  I don't have much to add other than there are some academic research articles in our "Research" section you might want to scan just to get an idea of some of the clinical data about autoimmune/inflammatory issues. Scroll down to "Autoimmune/Inflammatory/Oncological/Neurological" under "Physical and Psychological Comorbidities."

Sorry you have another layer on top of your trauma you are struggling with Boats, it's difficult enough dealing with Complex PTSD never mind physical conditions that sap our strength further.   :grouphug:


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Boatsetsailrose

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Re: Seriously questioning fibro /ME
« Reply #4 on: March 01, 2019, 10:00:12 PM »
Thank you kizzie for pointing out further resources very helpful. This week i don't think i have ms /fibro but it changes ....
Keeping an open mind at the Mo and reading research is very helpful.
Hope you are well today

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Kizzie

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Re: Seriously questioning fibro /ME
« Reply #5 on: March 03, 2019, 06:24:33 PM »
I know the back and forth thing too well.  I still have 'inflammation flareups' that make my joints very  seemingly for no reason or pattern I can track. It takes a few days of a heating pad, hot showers and Tylenol to reduce the pain. 

I wish it were simpler to be diagnosed but I don't think medicine is all the way there when it comes to the damage toxic, ongoing stress can cause. It is getting there though so hopefully you and I and others like us will  reap the benefits in our lifetime.   :yes: