Seriously questioning fibro /ME

[Boatsetsailrose]

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 ?

[Rainagain]

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.

[sj]

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

[Kizzie]

   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.   

[Boatsetsailrose]

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

[Kizzie]

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.   

[Boatsetsailrose]

Urrr fed up today... Had a good wk end away at a festival and even though I conserved energy, went to bed early etc having a major crash this wk...
Back to aching joints/muscles... Heavy heavy body.,exhaustion,sleep not doing it,, blah blah... I have a doc appoint Monday so am def going to raise my concerns of cfs... This is not normal...
Feeling frustrated today... I love being active its so in my nature... Who wants to be laying in bed! Need to go to the shops later and it feels like a mountain needs to be climbed... Think ill need to get a taxi

[Kizzie]

It might help to keep a record of your flareups, what precedes them, symptoms, etc. There are two OOTS forms you could use, the first I think you've used to get your disability in place - Complex PTSD Symptom Tracking Form and Psychological & Medical Co-morbid Conditions Record.  Both are here - https://www.outofthestorm.website/downloads.  There's also a fact sheet for GPs - Fact Sheet for GPs: Understanding Complex Trauma.

Good luck, I hope your doc is willing and able to help you. 

[Boatsetsailrose]

Thanks kizzie that's a great suggestion and one I shall take..
Hope u are well today

[Boatsetsailrose]

Sj
Thank u for your detailed post with all your exp and knowledge.. Its v helpful to me.
I've just come back to this post after my symptoms have gotten worse over the past month esp last wk. This has now got me to sit up and take things much more seriously and really taper my activity and active brain.

With the advocacy agencies are there any you would recommend? I live in the UK.
I have just been referred to the cfs clinic via the NHS but unfort didn't check with the gp what her referral looked like and so don't know if she made a strong case or not. Time will tell.

I feel my mood has lifted a bit today as I feel a little more in control. Accepting this after what is a long crusade with cptsd is certainly going to be a process..
With cptsd it is that I've fought to be heard, get my needs met and crashes more times than I care to mention.
I don't have fight left in me.. And actually what I'm realising is cfs presently   requires me to down tools and not fight...
To really surrender and let go in order to win... I've never really done this is my life.. Maybe that's the point...

[sj]

Hi Boat

I rarely pop in here, since months back, so I only just saw your latest post.

Since it's been a month since you wrote it, I realise you may already have found something in way of local support groups.

I'm in Australia, so I can't speak to direct experience of anything in UK,  but just in case it is still helpful, one way I try to make sure the group is coming from the right place is to see if I can find their position on CBT (which may help with coping, but should not be used as a cure, which it unfortunately often is) and GET (Graded Exercise Therapy, which can make people worse) as valid or primary treatment options. If the support group are good they will be very critical of these approaches as they have been used to very damaging effects on people who have the key symptoms of PEM and OI (as i mentioned above), which are significant indicators of a clear type of pathology (I make this point as there is STILL    no clear diagnostic testing, so all sorts of illnesses are probably being lumped together under a 'Chronic Fatigue' banner, which also sidelines the important delineation of 'Chronic Fatigue Syndrome' .... almost all types of pathology cause fatigue, but not the same type of unrelenting, deep exhaustion which is made worse with exertion, etc).

For the record - one of the deaths I mentioned above was of a young Australian girl named Alison Hunter. I was told in conversation with a friend of that family that she died taking part in a special program at a Sydney hospital for young people with ME/CFS which was focussing on using GET, and I think also CBT. My recollection of that conversation is that her system went into shutdown (which makes sense in the mitochondrial/ cellular energy disfunction model). It's been many years since I had that conversation, so I cannot recall specifics for sure, but was told something along these lines with the warning to be very careful with my activity and to not underestimate the illness (IMPORTANT - she was very sick, so I don't want to scare you or anyone who is not at that more extreme level. Just to be aware of the importance of not pushing things and not accepting GET as a valid treatment option if someone tries to steer you in that direction).

There was a highly disputed trial in the UK called the PACE Trial, which focussed on the whole CBT and GET thing and they ended up diddling their results as they were so bad, but still tried to justify and defend it (!!!!  ). But it has been soundly pulled apart by some very acute minds. I now use that as a reference point for where an organisation stands. If they are in favour of PACE, imo GIANT RED-FLAG!! KEEP AWAY!! If they are critical of PACE, then they are the 'Good Guys'  . The thing to be VERY aware of, especially in the UK, is the way the psychological/ psychiatric aspects have dominated the ME/CFS treatment landscape. This has led to very inappropriate and detrimental treatment (I just deleted what I wrote about the case of UK woman named Sofia Mirza because I got worried it might be triggering for others reading. I hope information is still easy to find for anyone interested in her story).

Psychological components can affect a range of health issues, but that does not negate the actual pathophysiology of any illness. Cardiac issues are a great example - stress is a known underlying and aggravating factor, but once actual heart disease has manifested it needs to be treated in an appropriate medical manner, not just psychiatric drugs and psychological interventions, or anything that had been shown to worsen that very physical condition.

I just did a quick search and came up with an article critical of PACE on the ME Association website, so my personal feeling is that they are worth checking out.
https://www.meassociation.org.uk/2017/07/the-pace-trial-the-making-of-a-medical-scandal-29-july-2017/

Again, I've written a fair bit , but hopefully useful info and to point out that where treatment attitude comes from matters a great deal. Hopefully you've already made some good contacts for advocacy grounded in this attitude.

And I totally hear you on the surrender thing, even though I STILL struggle with this close to 15yrs down the track. I've got a lot of fight and energy in my nature, so the surrender doesn't come easily to me  . Mind you, not having other supportive elements in place has meant I've not had much choice a lot of the time (eg; not having stable housing), but I've gotten much better at knowing I need good advocates in the health-care system so do what I can to find the right people who are happy to write the right things to help me achieve the safe, quiet space I need to try and surrender as much as I can. I certainly feel very worn out on a lot of levels, these days, and glad I now have stable housing of my own so I can let go, deeply rest and try to recover as well as I can.

All the best to you
sj

[Boatsetsailrose]

Hi sj
Thanks for your post and all the research and info..
I'm still awaiting the referral process..
Yes agree so many underlying issues present as cfs... I don't feel it stems from no where.
I'm due to see the medic tomor to talk about HRT as my estrogen is v low. A women I was speaking to said she was peri menopausal and had all the symptoms of cfs..
Glad to hear you have stable housing and can rest and have the security to heal further....
Best wishes to u
Boats