Fibro or stenosis/spondylitis

[Stoned53]

I was seen by a rheumatologist last week, to be checked for fibromyalgia. I have stenosis in c3 to c7 (myelopathy), the surgeon I’m under has told me that the condition seems to have plateaued out and does not recommend surgery at this time, when I tell him about all the aches and pains I’ve got he tells me it’s not caused by neck. The rheumatologist I seen blamed evething on my stenosis and spondylitis and suggested i tell the surgeon I want this very serious operation. Any thoughts would be appreciated.

[Maud-ie]

Hi. I was diagnosed with fibromyalgia about 10 years ago but now awaiting MRI to see if my spinal stenosis at c3/4 and c5/6 and c6/7 and sacrolilitis has worsened. Never sure what is causing the pain.

[Freddie20]

Hi. I had the decompression surgery about 5 years ago. Please only have this as a last resort, I have been in agony since, and can barely walk more than a few minutes without pain. I was diagnosed with fibromyalgia in November not sure that the surgery and stress triggered the fibromyalgia, or if that was part of the whole thing.

Find a good physiotherapist or try other treatments. I wish I could turn the clock back.

[harmony2 in reply to Freddie20]

Ugg!! Felt so sad to read this. So really truly sorry. Chronic pain is so wearying!

If you are okay to reply, what is Decompression Surgery? Is it fusion of your discs? Other? I have similar problemsto #stoned53 And wonder about surgical treatment.

[Freddie20 in reply to harmony2]

Hi...its where they remove a bit of the spine to make room for the spinal cord so it takes the pressure off. Had all sorts injections ect. I really wish I had just not let the surgery go ahead. Maybe I was just unlucky ... i have recently been refered to the pain clinic, they are fabulous, I am now seeing a physiotherapist who is giving me exercises to do. Can't take the pain killers they knock me out.

[harmony2 in reply to Freddie20]

Thank you for your feedback.

It sure sounds like you have a massive regrets about having the surgery done. I wonder if it also has anything to do with our hyper-sensitivity to pain. Example: I can bump into a wall, usually and door frame, and see stars even though I know I really haven’t actually whacked my arm, toe, or whenever body part that hard! For myself I have wondered if surgery might trigger all sorts of pain because it seems like my neurological system has gone haywire. Issues with migraines; neuropathies of tingling, numbness, et cetera; lots of nausea, sort of a dizzy feeling as well as general feeling of unwell; A huge increase in all being hypersensitive to sensory input; etc.

So, maybe like yourself, even though I know that I have a lot of pain tolerance and can cope with significant and chronic pain on a long-term basis (about 20 years now) I wonder if it somehow it impacts our neurological systems. Alternatively, possibly it is the other way around. Maybe our neurological system was faulty in the first place and has sort of created a negative feedback loop.

Re. physio: Yes, it is a definite help (along with some tramadol and paracetamol, in my case. I don’t take the full amount they allow me to under the prescription but I think I’d be actually bed bound if I didn’t have that extra help).

My challenge with doing my daily exercises (which I’ve been doing since 2013) is that my energy is getting smaller and smaller :(. Most days now I literally feel really unwell after doing some of them, not even all of them! I’m trying so hard to maintain some mobility and muscle strength and it’s declining further.

I’m open to any advice there, if you have any. I’m at a loss.

[Freddie20 in reply to harmony2]

See if your gp will refer you to a pain clinic, they are so understading, for the first time I feel really supported. Yes the fibromyalgia is a horrible all encompassing condition. I find that if I keep my stress levels down it helps, the counselor at the pain clinic has put me onto mindfulness.

Sometimes I get unbelievable pain in my hands and armd from holding a book. I'm not sure why we have this, I do believe that it is stress related. I know from my own experience that after 15 years of being in a stressful situation, I think the surgery was the last straw, and my body refused to keep going. I have pushed myself for so long. Its not good.

Have a look at a lady called Vidyamala Burch on YouTube I have also started listening to Dr Joe Dispenza.

With the exercise don't push, I always think animals are more sensible than us. Gorillas don't exercise, nor does my cat.

I have also started the Keto diet, sort of, cut out carbs, I have always cooked from scratch hate ready meals. Make a big stew and then you only have to cook every few days.

I really feel for you. Let me know what you think of Vidyamala.

Sending love