Horrific Pain

Hi Denise, my name is Cate and, except for the colostomy bag, your article above could have been written by me.  I tried Effexor, but it wasn’t strong enough, so I take Paxil. And I’m on a fentanyl patch and take oxy 4xday. Also, I started lyrica recently at 150x2day. I always seem to get all the side effects of any medication I take, so lyrical sometimes makes it hard for me to breath.  

as as far as the pain you describe, however, you an David I could be twins.  I started around the year 2000  with fibro.  I also have arthritis, neuropathy, lymphedema, anklyosing spondylitis, brain tumor, migraines, gallstones, hiatal hernia and I’m a 2-time breast cancer survivor with bilateral mastectomies and reconstruction. Whew! I think that’s everything. Yuck.  All of these medical ickies have pain and fatigue as #1 and #2 symptoms.  Which means I hurt 24/7.  (They still say that, don’t they? 24/7?)

so, anyway, I read somewhere that someone real sick once said “thank god for the pain, actually, because it’s the only way I know I’m alive.”  Yeah.  Well, believe me I used to think of the alternative of this from time to time, especially when it hurts so bad, tears fall without effort or notice.  I wish I could give you a gentle hug so you know you aren’t alone.  Thank you for writing your story because now I don’t feel so aloneness.  Here’s my hug for you.😔

Hi Denise I can totally relate to your story including the depression and Nanziety. I have for years been in great pain throughout my body. Back and forth to the GP . I know I have degraded bones and need spinal surgery on my back. By way for decompression and stabilisation. I been to ever consultant taken a lot off different med.  but still this chronic pain throughout my body is still there. I'm sure my GP thought I was a hypochondriac. All inflammatory malarkey came back negative. Which I read up that this can be the case. So as far as they were. On earned I was ok.  Total rubbish. I wish they could live in my body for a week and then tell me it's in my mind. 

 

They also said it was because I had depression. How many times have they thrown this at me at the doctors surgery.  I didn't keep going back as I felt they were not listening. I dread going to bed and waking up in so much pain. The fatigue is so bad some days that I find it hard to do anything but to lie down. I go with my body. I attended a group for 8 weeks on chronic fatigue. I was 3 weeks in then I lost my mum. So had to cancel it. I'm now going to attend in January 2018.  

Not it everyone is the same either having there two conditions.  They believe that graded excercise therapy is highly beneficial. Anything that really get the heart rate up.  So I've been trying to do this slowly. There is much debate on the causes and treatment between doctor to doctor and it's only recently been given that Fibromyagia is a true medical condion. Years ago it was cleansed as something very different as they did nfully understand what it was. 

I saw a Rhumatologist who diognosed my Fibro and he just said that  excercise will be Gd and then he gave me a print out regarding Fibro. 

  He said there was no need for a follow up at this stage.  I wonder where I go from here. I, sure there is so much more I need to know and do.  There are so many symtoms and areas of pain. and also I'm convinced certain shampoos, sprays creams  cleaning products exacerbate my condion but I don't know which ones . also certain foods also. But is there anywhere that list potential items and has anyone experienced this for themselves. I'd love to have peoples feed back. 

You do feel alone living with the cronic pain. I have other medical condition also Reynard. I have this in my finger, feet nose and ears. I've had two ops on my ears . Well they shaved my cartilage as they had legions on them.  But it has come back in the left ear now. It's so painful to lie on . I have to use a pillow with a hole in it to relived the pressure.

i hope this has been helpful and I'd llove to hear your stories and how you are managing. Any tips would be great. Many thanks for ready my post x

Days like this are when alternative treatments can provide comfort.

Heat packs, muscle rubs, cushions and dark chocolate with some relaxing music or meditation, measured breathing can all take the edge off the pain, when the meds just dont seem to be helping.

Thank you for the rant you saved me alot of typing. Just woke up from a really bad night. I dont think anyone family, doctors, friends or spouses will ever truly understand. In fact I have given up trying to make them. In 3 years I have developed moderate to severe Osteo in too many places to mention. My GP thinks there is also something else but no diagnosis yet. On a positive note my rheumatologist put me on plaquenil six months ago and it seems to work for alot of the stiffness and fatigue. I dont think they are ever going to know the full story of whats wrong.