Other Anyone here have cfs/me, fibro or other chronic illness?

[simplekindofgirl]

I suffer from migraines- at least one a week. I also have kidney disease, which started/symptoms presented while I was an older teenager- not due to PTSD but more than likely (in part at least) due to neglect for my health as a child, which may also be a part of my PTSD. I have pain of varying degrees depending on things such as weather/cold or barometric pressure changes as a result of the injuries from traumatic events- neck, back and shoulder.

Quiet and rest- what I wouldn't give for just one day of that!

 

[Tinyflame]

Yes- it's not 'radical' but it's sooo accurate, I think. How easy to 'miss' it.

 

[Lionheart]

I am shocked to find that I suffer from some things that I didn't even know were symptoms of CFS. Until recently I thought they were PTSD or depression symptoms.

Some of the symptoms that caught my attention are:

temporary dyslexia
slow information processing
slow verbal responses
clumsiness
an inability to block out background noise and focus on conversation.
nausea
etc. etc.

Also IBS which I am told is caused by anxiety :confused:

Here is a link with a full set of CFS symptoms for those who wish to understand this disease better.
Link Removed

 

[windwoman]

I also have Fibro, Diabetes, Hypothyroidism, Periodic Limb Movement Disorder and a handful of other age and stage things I take meds for. My Fibro started as a result of a major PTSD episode that turned into a whole new trauma.

The past 5 years have been some of the most difficut years since my kids were abducted. I can hardly function and I have felt shattered. It has only been since the end of January that I have felt like "me".

I got a new PC doc at the clinic and he added a new (for me) RX for my Fibro. It has made a world of difference, but I still have to be very cautious about my physical activities. I still have days that I am unable to do much, but my overall pain levels are much more managable.

I have my Disability Hearing on 19 April. I haven't been able to work for the past 4 years and don't see that changing any time soon. That being said, I refuse to be defined by my illnesses. I do the best that I can on any given day. Some days I feel very productive, but most days I have to be very kind to myself and do very little.

I have only recently felt that I have reached acceptance of where I am and I'm beginning to make peace with it. That just means that most days I have a reasonable amount of serenity.

I was so grateful to see this question asked as I too have wondered if others were in the same boat. While I'm grateful to not be sailing alone, it deeply saddens me to know that so many of us suffer from such physical and emotional pain.

On my really bad days I go back and re-read the "You might have PTSD if ...." I find that humor, for me, is still the best medicine. It also helps me put things back into perspective.:whistling:

 

[Tinyflame]

I thought that so many of those physical symptoms were just part of ptsd itself.

 

[Daisygirl]

I have IBS, asthma, allergies, non-allergic rhinitis, fibromyalgia, was diagnosed with CFS (but my new Dr. doesn't agree), PTSD with DID, eczema, pseudo-seizures.

I have to watch what I do, how much and how often. I plan my day very strategically with breaks, snacks and hydration. It has taken me several years to get a decent routine. Like TLight and others have said, down time and rest are essential. If I push too much, I have noticed that my pain level goes way up.

I have no scientific data to support this, but it seems like my electrolytes get imbalanced and I get dehydrated. I wonder if this might have to do with the extra adrenaline to keep going?

The other thing in general is flexibility with my plans. I find this still very hard to do. I like to set my goals and keep them! But, a lot of the time, I have to stop before I get everything done. I have to listen to my body.

Ways I help with pain are gentle exercise 4 to 5 times a week. I walk and alternate a floor routine that has physical therapy exercises for my knees and hips plus gentle stretches. Depending on my energy level, I vary the intensity. The breathing that goes with the exercise I think helps ground me some too.

Another things that I have noticed make me worse are caffeine and chocolate. I still have them occasionally, but I pay for it.

As Junebug mentioned, it's hard to know if CFS and Fibro are part of PTSD or not. My T believes they are the same. She doesn't have scientific evidence to support her theory, BUT she is a trauma therapist. Most of her trauma patients exhibit symptoms of Fibro and CFS. The other possibility is that the stress from PTSD makes us vulnerable for these strange illnesses.

 

[PTSD sufferer]

I was diagnosed at 12 with CFS and Fibro, they traced it back to probably 8 years old when it started. There are many theories as to what causes it, including genetics, auto-immune problem, post viral (I had a bad virus that was left undiagnosed and thus untreated). When diagnosed I was the test dummy, every possible treatment under the sun was given (tablets, injections, herbal remedies) I eventually drew the line and said 'I am tired of being a pin cushion with no relief, so I'll work out how to manage it myself thank you very much'.

Then over the past few years the medical profession added emotional causes to the possible list of causes.

My mother thought she had it (through self diagnosis) as did my father (hypochondria). So they put it down to genetics with me...but I don't really think so, I have not seen them unable to cope with mobility, exhaustion and physical pain of the fibo like I have.

The funny thing is that I have childhood traumas, and looking back now with knowledge, I think there may have been an emotional connection that affected my immune system. But there are no definitives, all I know is that extreme stress can cause physical problems as well as psychological ones.

I use gentle exercise in a warm pool, anti-inflammatory cream (ibuprofen creams) on my joints, yoga. I take care of my immune system as best I can and try to manage sleep (not easy). My mobility isn't great at the moment (bersa in my hip joints which is inflammation at its worst). So I get physio and sonic therapy to ease that a couple of times a week. It's another thing to try to self manage isn't it, on top of everything else we need to manage...

I really feeling for you Lionheart, as I am struggling with my mobility and exhaustion at the moment. So if you are looking for a friendly avatar, I am in the same place and I'm here. PS xxoo

 

[Robert D. Cubby]

I agree with that stress from the PTSD makes us vulnerable for these strange diseases. One thing I was told by my T was to try to manage the stressors in your life that you can manage. Diet was a big one for me. Carbohydrates play havoc with my blood sugars and good cholesterol. Calories also, due to my Metabolic Syndrome. They all, in turn, drive my blood pressure up. Not a very comfortable feeling all the way around. And Metaboilc Syndrome and resultant calorie/carbohydrate intake are driven by stress. I can't manage the stress very well because of my PTSD, but I can manage my carb/ calorie intake. By sticking to my diet set by my Dr. I have, at least, brought that portion of my illness under control. Rest is important and frequent breaks and hydration. I have to schedule my days around that. If I can't, then I avoid that activity, if possible, until I can take breaks. If I don't take breaks, I pay for it with fatigue the next 3 days Again adding to the stress I already feel. The other symptom of PTSD which is problematic is my forgetfullness. It's very disruptive to trying to get things done or a normal flow that's part of normal everyday life. I haven't gotten a handle on that yet. Notes help keep me on track. But the frequent breaks often derail the best intentions and adds to my frustration.

 

[AngelaMarie]

I have both. Anytime you need to reach out I am here.

 

[Kimberlyp]

I too am a sufferer of a few chronic problems. Fibromyalgia, arthritis, and a few others. I remember having arthritis pains around age 5. It's so difficult and exhausting just dealing with the pain from the fibro and arthritis and then add the symptoms of PTSD, it's unbelievable at times. I am soo tired but can't find a place to sleep that doesn't cause pain and numbness from spinal stenosis so when I am able to get to sleep it doesn't last long.

 

[Barberian]

I'm suprised I didn't see this thread before.

I have Fibro, and diabetes T2. I am usually in pain. Sometimes like last week it totally ruins my day/week depending on how bad it gets. My pain is mostly in my joints except when it gets real bad, then it's all over. I can walk for miles, but ask me to stand still for 15 min and you might as well shoot me. Constant preasure or irritation is unbearable. I am extreamly noise sensitive (both a symptom of fibro and PTSD). During and after a fibro attack, I suffer from exhustion easy and my muscles feel weak like I climbed a mountain and forgot to eat.

Fibro first started affecting me in my mid 20's, but it was limited to standing still for any lenght of time or holding onto something tight for more than a few min. It has progressivly gotten worse as I've gotten older. I have to roll over at most every hour all night long because of the pain. I get 2-4 hours "good" sleep then I toss and turn the rest of the time I'm in bed. I've woken up in so much pain I couldn't roll over or move more than a tiny bit. I've had to slowly rock myself back and forth for several min to get "loose" enough to move again.

The more pain I'm in, the more my "stress cup" is filled. The less I am able to deal with and control any aspect of my PTSD, anxiety or depression.

 

[Lionheart]

I too have trouble standing on my feet for any great length of time.

Also,I read somewhere that sitting in a draft of air can cause a fibro flare-up. Can't say if this is true or not, but it is worth watching out for to see if it affects you.

I appreciate all of the replies. My heart goes out to each of you who suffer from multiple and/or other chronic illnesses in addition to PTSD. It certainly is a daunting challenge at times and it helps to know that I am not alone.

I will keep you all in my thoughts and prayers for peace, healing and comfort.

LH