5 years of back pain, normal MRI - feel like I’m going nad

[SinkGirl]

Finally got referred to back pain clinic after 5 years of upper back pain - constant moderate pain along with altered sensation, tingling in limbs etc, and then severe flare ups where I’m in agony, always after I’ve been lifting my twins too much or have twisted strangely or similar.

Physiotherapy and exercises hasn’t helped, chiropractors didn’t help. I do my physio exercises and Pilates every day except when it’s so bad I literally cant move. I’m having a terrible flare up right now as my twins have been off school for summer and they need a lot of lifting - haven’t called the doctors yet as I’m sure they think I’m a faker (I’m already on morphine due to endometriosis and so absolutely hate asking for muscle relaxants 2-3 times a year when it’s unbearable).

Had the MRI in June, and a call today to say everything is completely normal and that it must just be chronic pain since I already have chronic pelvic pain. But it’s just so different to that, what triggers it and the type of pain.

I’m honestly absolutely shocked I don’t have a slipped disc or some other visible issue. But apparently I don’t.

Obviously I don’t want there to be anything majorly wrong, but now I’m realising I’m stuck like this. Doesn’t help that it’s come at a time where I’m in so much pain I can barely move. I’ve just absolutely had enough - summer has been horrendous and I’m just completely at the end of my tether with everything.

Has anyone been in this situation and things have gotten better? I’m already in a mess with the endometriosis and adenomyosis and waiting on a hysterectomy. I don’t need more pain. I’m not even 40, no idea what I’ll be like in 20 years.

Sorry just to say, I have hypermobility, but the condition I was referring to where your pain receptors become hypersensitive after a prolonged period of chronic pain, that doesn't require hypermobility. What muscle relaxants are you on at the moment, is it worth exploring a few more of those?

can you get a steppjng stool or step ladder so your dc can climb up onto the changing table themselves?

Sometimes lying down mris don't show everything. Maybe worth getting an upright one?

I have been diagnosed with Fibromyalgia after 3 years of back pain/joint pain etc Basically a cop out as they've ruled out anything serious (through multiple blood tests, scans, X-rays etc)

After bursting into tears on the phone to a GP, he suggested we try Duloxetine. It's an anti anxiety/depression tablet also used to treat chronic pain. I'd previously tried various traditional pain killers and Pregablin, but couldn't function properly. I found it life changing, not completely removing the pain but its a lot more manageable. Could be worth speaking specifically to a GP about that as an option as I'd never heard that drug mentioned before.

Otherwise, the only other major thing that helped was going on a 6 week pain clinic pain management course with psychologist/physios. I do think there is a lot about the psychological causes/effects of pain that are useful to understand.

I know it's easier said than done, but it was a big deal for me to stop worrying constantly about the pain and that something major was wrong with me. Along with the medication help I try my best to get on with my life living with chronic pain. I have completely cut out alcohol (which was causing anxiety), improved my diet and try to do some exercise too. I've also found regular yoga very helpful.

I do have some video links to some of the pain psychology content if that's of interest to you, just DM me or @ me here.

If you have AS it shows up as a marker in your blood for the majority of people, so I would push for a rheumatologist appointment to discuss that test, as well as potentially fibromyalgia.

Thanks everyone - looking for some sort of suitable steps now and will see how that goes, and will try to sort some more physio.

Duloxetine and similar I’ve tried in the past for long periods, although back when my only issue was the endo - they just made me feel so ill. I have diagnoses of both ME and fibro, both made by GPs after blood tests were clear. Rheumatology refused my referral 3 times (because apparently I’d already been diagnosed with fibromyalgia), but the back clinic I’ve just been to is part of rheumatology and they reckon I’ve had any blood test they would do and now the scan is clear they’ve discharged me. Been to pain management courses, anaesthesiologists and neurologists who specialise in pain etc over the years.

The weird thing is that I never worry I have something horribly wrong, so I don’t think I have health anxiety. I would be over the moon if they could just figure out what’s wrong and even more so if that thing has an effective treatment. Sick of having things wrong that are hard to diagnose and treat.

I’ve been on every painkiller known to man at this point. I’m not on any muscle relaxants except for the short courses of diazepam when things are at their worst. I always say to the doctor I don’t want diazepam specifically, I’ll try anything that might work - they just say there is nothing else. I will ask about things like baclofen (I’ve heard of it, never tried it). I honestly don’t care at this point, I’m just so fed up of the pain and myself through the day rather than feeling well - the fatigue is probably the worst part but there’s no pacing when you’ve got two disabled kids. At this point it’s hard for me to believe that most people just feel well most of the time, I can’t even imagine what that’s like, and I’m just so tired. On the plus side we’ve just got melatonin prescribed for one of the twins after waiting two years for the sleep clinic so maybe there’s more sleep in the future.

Unfortunately this is common. MRIs and CTs often don't find anything when it comes to chronic back pain. There is some debate about whether they should even be ordered for this, because it so often doesn't lead to a solution.

I work in MRI and have seen it myself. Other times the patient may have quite a bad looking back but may hop off the table and walk away no problem. Or there could be something but not in the painful area.

Sorry I don't have any tips or good ideas but just posting to let you know you definitely aren't going mad.

OP, from what you say hopefully they will be out of nappies by Christmas, so perhaps future school holidays will be easier for you. It's interesting that the limit SS perceive as manageable is 18kgs - that's roughly the filled weight of the large garden pots I got rid of, due to noticing they were a trigger after moving them around. Well, at least knowing the weight limit means that as soon as they go over that weight you can push for a hoist and/or any help you need, so keep an eye on that and be ready to push SS once they exceed that weight.

You've been dealt a very difficult hand of cards, it's no wonder you're tired all the time. I hope things ease for you soon and maybe there will be some respite care offered to you in the future, so you can have the rest you deserve.

Have you tried an acupuncturist? Mine has relieved chronic pain immensely.

With my old back pain, nothing showed on the MRI and I was in agony. I had steroid injections and then found regular exercise and yoga helped manage it

I had a similar experience when my child was young. I got better after steroid injections into my back. Now keep on top of it with gentle pilates, and keeping mobile. I am very careful when lifting anything. Have to admit that my back only really got better when I didn't have to lift children anymore.

I would honestly recommend people with Ces/fibro look into SIBO. There are some recent studies which indicated this is the cause. Bacterial overgrowth causes toxins in the body, as well as absorption/deficiency issues which can cause really horrific tiredness, pain and brain fog amongst other things. Chris Kessler is a good site to look at and it’s really worth a try. I got privately tested, and after 7 hellish years feel normal again and I’m back working full time. It’s such a horrible illness and appreciate there is more than one cause, but if you haven’t ruled out SIBO you should check it out.

This is a link chriskresser.com/is-fibromyalgia-caused-by-sibo-and-leaky-gut/