The Chronic Fatigue Syndrome and Fibromyalgia Symptom Description Thread

[Sarah R.]

You have described my symptoms exactly. Check out postural orthostatic tachycardia syndrome. POTS

Sharon, thanks for your suggestion. I definitely have orthostatic intolerance, but I don't think I have POTS because my heart rate doesn't speed up. I'm sorry you have the same symptoms, but I'm happy I could describe them for you.

 

[Katie]

Hi all, I experience the 'muscle coming away from the bone' type pain in my legs too! that's exactly how I describe it! I also feel the burning sensation (mostly after walking upstairs too fast) .
Pain-wise I also get pain in my jaw and face
Is this all FM?
My doc has not very descriptive if what it actually is/feels like, and I'm new to my diagnosis. I'm low level apparently, but it's getting gradually worse (though I've been told it's not progressive?)

I also have a strange symptom, that though I've had it all my life (like my hypermobility) I wonder if it's related? If anyone touches my rib area (like my little nieces trying to tickle me) though I know the touch is really light, it really hurts and for minutes afterwards. Any clues on that?

I get that too. On my left side just under my rib. I can't even touch it when it flairs up. It is a strange symptom but that's FM (and ME/CFS). Look up alodynia and hyperalgesia online. I also get pain in my jaw and face sometimes it feels like I had a wisdom tooth extracted that's how painful it can get (I do see a dentist regularly).
You say you are new to the diagnosis. This is an excellent blog concerning FM and ME so keep reading here. All you can do now is get all the knowledge you can so you can understand what is happening to your system. I'm still learning and try to keep up with research. I've been doing this x 15 years and I have a medical background so do not despair if it all seems confusing and conflicting ideas at times. Listen to your body, it often knows what it needs. Like a lot of rest, really good diet-I'm off wheat, caffeine, dairy and more. It really did help. For me cymbalta was the turning point for a lot of pain relief but it doesn't work for everyone. I did not do well on low dose naltrexone (LDN) or methadone. These are some alternatives to narcotics for pain control.
Good luck. You have lots of company (those with FM and/or ME) all over the world.

 

[KweenPita]

You have described my symptoms exactly. Check out postural orthostatic tachycardia syndrome. POTS

 

[KweenPita]

Thank you, yes POTS is a given, but my PMR was very interested in the Blood Volume Information I shared with her that was mentioned on the site here recently. Since she just, CORT HELP ME HERE, she injected lidocaine and steroids into my ganglia on left side. Going up through my neck at the base of my collar bone and threading it upwards. Again, another procedure we heard may help me on this site, she was open to try. It's had two very noticeable effects on me thus far. First, my PTSD reactions have drastically changed. I don't go into a panic mode, or disassociate. I am very assertive and direct, with people who would normally shut my my typically strong personality down to shreds. I can watch programs dealing with my abuse and be angry but controlled and not have to frantically flip channels. Also, my TMJ used to be so bad even my neck muscle on that side would tense to feel like steel. Now, no. I, too, was on Methadone but had opposite problems. Even on 10mg twice a day, when my kidneys started weirding out and failing, my meds made me overdose. All that to say, that's why my PMR is excited about Blood Volume. My Kidneys act like they aren't getting enough blood. This site may have gave me another answer. Fingers crossed, and prayers.

 

[fibroite]

Fortunately, or unfortunately, I have a multitude of other chronic health problems and surgeries so that it is hard to tell sometimes what is FM and what is the aftereffects of the most recent surgery (or discovery of an inherited health condition). I had severe chest pain and other PEM symptoms back in 2000 & 2002 that were bad enough to get a referral for an a stress echocardiogram (with NIL results), but it wasn't until much later in around 2009 that I was diagnosed with (inherited from my Mother's family) Hypertrophic Cardiomyopathy for example. Now severe.

I do remember several incidents while still working full time prior to 2010 like not being able to work out how to write and spell (in my office accounts job) and usually having about 6 rest breaks on the (normal) 12-15 mins walk home from work. There were days I couldn't walk down the office corridor and had to use my hands on the walls to support me so I didn't fall over. It was like vertigo (except that I've never suffered from vertigo before). t remember one day arriving home so exhausted I could only sit on the couch in my coat because I was too exhausted to take it off. I sat there unable to get up or move my arms as the daylight faded and it was about 4 hours later after sitting in the dark, unable to move, that I was finally able to stand, turn the lights on, eat some bread (I was too exhausted to butter it) and then undress and fall into bed. I remember sitting down in the gutter near my local food market because I was too exhausted to stand (while waiting for the taxi to arrive and take me home).

And I can't count the number of times my limbs won't do what my brain tells them to.

'Limbs of Concrete' and unable to move was a big issue back in those days of working. Tripping and walking into office furniture was also a problem. 'Waddling like a Duck' on the walk home was a regular occurrence. Severe headaches in the last 5 months of working with brain scans, ophthalmology consult and a month off work (mainly sitting in a dark room doing nothing for the first week) and then, the first day back at work being unable to see straight, or continue working, resulting in my quitting my job permanently.

It's much rarer now, but sometimes I can be happily watching my favourite TV show and my wrist (or other body part) starts hurting and within seconds it feels like my wrist is 'exploding with pain.' I don't get a 'sore' or 'aching' body part, it feels like an army of thugs is belting me continuously with baseball bats. And just when you think the pain can't get any worse, it can disappear and it's like the episode never happened. How do you tell a doctor about excruciating pain (when the pain disappears before you can get to the medical appointment.

2 months ago, I had a second round of back surgery and 2 weeks after being discharged from the rehab unit, I had a bad fall and gashed my head (with concussion). It took 3 weeks to recover and stop feeling severe pain not only on the injury site, which was expected, but other weird places. I was so dizzy that walking around my apartment made my legs feel like jelly and my fingers, hands would drop things & legs would bump into furniture and so on. My GP diagnosed Post Concussion Syndrome, but I wonder if it was an exacerbation of FM/CFS/MCS symptoms?

I still have pain from the lower back surgery site from 2 months ago.

Every time I have an exacerbation of physical or cognitive dysfunction, my MCS rears it's ugly head and I have to stay away from people, shops, road works & anywhere where there is the faintest hint of cigarette smoke. (I used to be a social smoker back 40 years ago).

Recovered now.

Yes, I have what some would call a great life in (enforced) retirement, but I do nothing that will incur or exacerbate symptoms. No one understands ICI (invisible chronic illness) except those who have it.

.......and if one more person tells what I should, or should not do, (e.g. go out with friends and have a laugh and a few drinks and I will forget all about it), I WILL STRANGLE THEM! If one more person tells me I need to get out more, or try and get a part-time job, I will...................(enter your own words here).

I sure understand how you feel about wanting to strangle people who have no idea what it feels like to have in my case fibromyalgia! The insentive jerky turkeys that told what I should do were driving off the deep end & 2 of them were very close family members I have a wonderful pain Dr who gave me the best advice at that time! Marsha you need to stand up for yourself or you are not going to make it! My former self was the one who did it all I loved my job I loved my family my friends & most importantly my dogs! Without the support of this Dr my best friend & who is my next door neighbor & her elderly wonderful mother I don't know that I could have surrived the torment I went though by my entire family! My husband my kids & my only sister, who was always my ally! Most of the horrible things that we said & done were fueled by my beloved husband who had a breakdown 4 yrs prior to my fibromyalgia, causing me to loose my job & I didn't know right away but he was & is an alcoholic who had once been such a great guy & the love. of my live and was a very convincing liar! So I did start standing up for myself as my former self would have done & the reaction to that was must have gone crazy & the liar kept lying & the loved ones kept telling me what I SHOULD BE DOING TO GET BETTER! My favorite was you really need to get some sleep? Oh really gee is that a new thing? I just love it when I can't sleep knowing how I feel even crappier the next day & cant drive my car because I know I'm not fully functional! There was always something I should do never ever what can I do to help you. So old me the Dynamo people pleaser was now the nut case who wad high on drugs 24/7? Then the "you can't let yourself get depressed" gang moved in! I was at the lowest point in my life and knowing full well that they would never have treated the former me that way. So I fought back avid still do there are some that are no longer in my life but I don't worry about that but it's a constant fight to keep going but it's worth it! I'm still standing up for myself I now when someone starts that I have a ? who has fibromyalgia &. This is where I stop the conversation I say, "I appreciate that you know someone that has Fibromylgia but this is a very complex disease and what works for some people might not work for others but I do appreciate your thinking about me." This works well for most but the clods are hopeless! Plus they have no humor

 

[KweenPita]

I sure understand how you feel about wanting to strangle people who have no idea what it feels like to have in my case fibromyalgia! The insentive jerky turkeys that told what I should do were driving off the deep end & 2 of them were very close family members I have a wonderful pain Dr who gave me the best advice at that time! Marsha you need to stand up for yourself or you are not going to make it! My former self was the one who did it all I loved my job I loved my family my friends & most importantly my dogs! Without the support of this Dr my best friend & who is my next door neighbor & her elderly wonderful mother I don't know that I could have surrived the torment I went though by my entire family! My husband my kids & my only sister, who was always my ally! Most of the horrible things that we said & done were fueled by my beloved husband who had a breakdown 4 yrs prior to my fibromyalgia, causing me to loose my job & I didn't know right away but he was & is an alcoholic who had once been such a great guy & the love. of my live and was a very convincing liar! So I did start standing up for myself as my former self would have done & the reaction to that was must have gone crazy & the liar kept lying & the loved ones kept telling me what I SHOULD BE DOING TO GET BETTER! My favorite was you really need to get some sleep? Oh really gee is that a new thing? I just love it when I can't sleep knowing how I feel even crappier the next day & cant drive my car because I know I'm not fully functional! There was always something I should do never ever what can I do to help you. So old me the Dynamo people pleaser was now the nut case who wad high on drugs 24/7? Then the "you can't let yourself get depressed" gang moved in! I was at the lowest point in my life and knowing full well that they would never have treated the former me that way. So I fought back avid still do there are some that are no longer in my life but I don't worry about that but it's a constant fight to keep going but it's worth it! I'm still standing up for myself I now when someone starts that I have a ? who has fibromyalgia &. This is where I stop the conversation I say, "I appreciate that you know someone that has Fibromylgia but this is a very complex disease and what works for some people might not work for others but I do appreciate your thinking about me." This works well for most but the clods are hopeless! Plus they have no humor

 

[KweenPita]

I understand my mother, 77, has Fibromyalgia, but a really "peppy" version. So I am feeling your distress. I am labeled and compared, but really just don't get into with her, besides if I keep her talking about her own life 700 miles away, conversation soon over and pleasantly concluded. Like your case is so different and difficult. Mine is different and no one has heard one like. My PM Doctor was providing acupuncture to my back last week and said Wow you're muscles look really tense. Then had to reapply some needles because my muscles were so tense they were tensing and pushing out the needles. While a month ago my new Veterans Dept. GP tells me my 3 doses a day of Zanaflex are too much. That SHE has MS and doesn't take that much. I wish I had thought about but would have said and Yes, you have MS and are still working a Job. What's our pain levels? And I am disabled.

 

[fibroite]

Mush in my brain,
Body in pain,
Fire in my veins,
Muscles are drained,
Sweat falls like rain,
Patience is strained,
Since I haven't been slain,
I must have been hit by a train!

 

[fibroite]

That is a perfect description & poetic too

 

[Kathy Bungard]

Yesterday I was trying to do the minimal daily food prep tasks so at least I would be eating healthy food and not making things worse if at all possible and my hands and feet could hardly move I felt like I was wearing heavy cement boots. Even the short amount of time it took to stand in the kitchen to get some soup going left my back burning with lactic acid building up - I always imagine it is like playing Tetris and the blocks are made of fire and are falling ever faster.

The left side of my face was also on fire, my joints were screaming at me and the deep tissue myofascial pain around my rib cage was tightening like someone was turning a screw in them. Just putting one foot in front of the other took immense effort and as usual halfway through any task I wondered how in the world I would finish anything before collapsing.

Then someone stopped by the house and as I sat down at the table with them, grateful to be able to hold on to something to keep upright they brightly looked at me and said 'how are you? You are looking great'.

Heaven help me, how do you tell someone that their saying you look great can crush like a boulder?

 

[Ladyliegh]

Wow, there are a lot of people suffering here & being brave to discuss it in detail. It is unnerving to see so many who have prepared a exit with medication. My heart breaks for you all & I really hope the exit plans are not executed.
(I have lost 2 cousins this past year to suicide, it really is difficult for those left behind.)
My pains have changed a bit in 30 years... at first I was just struggling with a never-ending flu, sore throat, body aches, hot & cold flashes, brain fog and of course no energy. Now at 57, I have spinal stenosis, broke the same leg twice, & lately shoulder pain (I am double jointed) it feels like I was strung up by my arms all night in Medieval style. Lower back pain has me walking like a hunch back with my trusty cane. Ice helps some... The new policies about pain meds, leave me few options,(luckily I have a Rx for Lyrica & Flexeril) The combination helps for now. I am allergic to Codeine, so options are limited & most meds put me to sleep. My brain fog has reached new lows, can't read a book or deal with anything that requires thinking. My car tag has been expired 6 months... I still feel like I have a never-ending flu & my allergies are reaching dangerous levels. I take 2 allergy pills nasal spray & benadryl daily. My nose runs constantly & I wake up congested & often sneezing. I have lost weight with this relapse, but I feel like I am dragging around 500lbs when I walk. My hands have periodic electric shocks, which makes it tough to do dishes or clean house, since the more I use them the more they hurt. I have what I call tender tummy issues, that can ruin a weekend completely. Blurry vision that no glasses can fix & occasional migraines that feel like my head is in a vice grip while being pounded with a hammer. Lights are always low in my house & I even wear sunglasses to watch TV at times. Sensitivity to smells is awful, I can't tolerate most perfumes. Then just for fun, I have kidney stones, I must say lemon water works well, 2 or 3 days & I am better, if I don't develop a infection...
Two years ago, I was mowing the lawn on a riding mower, doing yard work, going shopping. & other 'normal' things. I even put a pool in, that I never set foot in this year.
I have a secret to surviving all this, When I feel like I am doing a tad better, I run away from home, 2 hrs away to a casino, 3 nights free hotel stay, room service & it really helps my walking to wander around the casino. I enjoy gambling & it is good for me to get away, I always feel better & have more energy when I come home. I am a big believer in doing things that bring joy, they are few & far between.