Trying to figure it all out?

[Shirley0]

I am 40 in a few days time and I need to figure out what's wrong with me. I had spinal surgery about 6 yrs ago and ever since then I have suffered tingling in both my hands and feet, pain in my knees, hips, neck and shoulders. I dont really sleep anymore because the pain in my body keeps me awake.

I am quite active, I ride horses and work as a carer. I went to the GP and had bloods done that only showed dehydration (which I have now sorted). I dont know if I should go back to the GP and ask specifically about fibromyalgia? The pain is not always bad, mostly a nagging type pain, but when it's bad it's bad!. I cant go on much longer with only a few hours sleep a night ! Any advise greatly appreciated 🙏

[Cat00]

Hi, I presume the doctors don't think the surgery has damaged your nerves or you wouldnt be looking for other causes of your pain?

Sleep us a tough one, I only sleep in hour and and half bursts, it's been like this for many years now the doctors say there is nothing they can do. This doesnt mean they can't help you of course.

If they've run blood tests are they already suggesting a fibro diagnosis for you then?

[Shirley0 in reply to Cat00]

When I had the surgery the surgeon told me I will suffer pain for the rest of my life. I had my sciatic nerve crushed and had 2 prolapsed disks too (hence the surgery). So there is damage to the nerve without a doubt.I went to the GP several times about pain that I have and all they seem to do is take bloods then tell me there's nothing they can see.

I just want to know what's wrong so I can deal with it. I feel angry with myself when I'm having a bad day and cannot do what I was doing the day before. I'm also getting annoyed at being labelled lazy or a hypercondriac when I'm having a bad day.

[Cat00 in reply to Shirley0]

So I presume you are having pain you cannot attribute to the nerve damage from your opp ? Because if he said you will be in pain for the rest of your life and you are still looking for a further diagnosis this suggests you think that there is more than this going on?

[Shirley0 in reply to Cat00]

The pain is throughout my body and not consistent, I'm confused by it all and just trying to figure everything out. I always have an almost constant pain in my lower back (surgery site) but I also suffer pain all over the rest of my body , not all at the same time and sometimes I am pain free other than the base of my back. I am just not getting answers as to what it is and it's making me feel stupid

[Cat00 in reply to Shirley0]

Oh yes that makes absolute sense. Fibromyalgia often seems to be triggered by trauma; childhood trauma, childbirth, car accidents and indeed surgery so that would not be an uncommon path to get to Fibro. In fact back pain and fibromyalgia are often treated similarly by the medical world, with NICE guidance suggesting both should not be treated with painkillers as they are found to be largely ineffective and problematic in themselves.

Unfortunately getting diagnosed with Fibromyalgia won't yield many answers. Fibro is "poorly understood" I would argue it is not understood at all. They don't know what causes it, they don't know how it functions. There are many theories, some stronger than others, but none of them proved. Doctors don't like it, and unless you are very lucky, they are not very interested.

NICE guidance is anti painkiller, pro exercise and mindfullness as mechanisms for coping with chronic pain. If drug therapies are to be sought they suggest some anti-depressants.

Fibromyalgia is experienced very differently by each individual. There are many co-morbidities, a startling array in fact. For me the best thing about being diagnosed was the relief I felt at knowing that my Chronic migraines, IBS, Bladder Pain Syndrome, Anxiety, Depression and Insomnia are frequently found together with fibromyalgia. Before then I spent 20 years thinking I must be mad and that one person couldn't possibly have so many life long, incurable, "poorly understood" conditions. Largely through this forum I found out I wasn't the only one. The doctors never told me.

Sorry I can't be more positive for you, its not a great place to find yourself, hopefully the forum will help you too though.