Recent Diagnosis - am I going mad?

Fluffy26

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Hi everyone, I haven't posted before but have found this forum very helpful. I've recently been diagnosed although the doctor's had mentioned it a few times before they had to rule out RA and lupus as I also have had blood tests that show constant high inflammation and high in particular antibodies.
I also have osteoarthritis so the lines get a bit blurred to what's causing what pain. Currently I have burning pain in my lower back if I stand for a while or walk even a short distance. I have aching and pain in the bottom of my feet. I sometimes feel like my one leg is going to give way normally after an odd sensation in that leg. My latest is tailbone pain which gets really bad and I can't sit properly. I do get lots of other transient pains and suffer with depression.
Does anyone else have this burning back pain or tailbone pain? If so is there anything that helps you?
I feel like I'm going mad with all these different things.
Thank you for taking the time to read my post x
 

Jemima

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Hi Fluffy - love the username!

I'm not in a great position to advise on this as I have a big ol' list of damage to my lower spine from a horse riding accident, which muddies the water for me in terms of where the pain is coming from! That said, has your doctor ruled out disc degeneration due to osteoarthritis, or a herniated or bulging disc? It's amazing how often people manage to endure these kinds of injuries without realising. We are particularly vulnerable because of the relative inactivity and associated loss of strength that usually comes with chronic illness.

I'm willing to bet there will be people here who have lower spine pain with no discernable cause - I know this is a pretty textbook fibro symptom - but if you're chronically inflamed, that may be exacerbating something physical going on in your spine. If there's a chance of that, it might be worth trying to strengthen the muscles that support your spine to relieve some of the pressure (Google this for a ton of info) and to bring down any inflammation going on in there. I'd recommend icing your back and using diclofenac (e.g. voltaren) gel or patches to see if that takes the edge off. You can also sleep with a pillow under/between your legs to provide a better position for your spine when resting.

Whether you finally put this pain down to fibro or something local, you are definitely not going mad, and you are not alone!
 

Fluffy26

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Hi Jemima
Thank you for your reply. I have had a lumbar MRI which confirms degenerative changes - osteoarthritis, mild stenosis etc., but nothing major to attribute to the amount of pain I'm in. I have also had physio but didn't help.
I will definitely look into your suggestions, I will try anything to be honest.
Thanks again for taking the time to reply.
 

Jemima

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Hi Jemima
Thank you for your reply. I have had a lumbar MRI which confirms degenerative changes - osteoarthritis, mild stenosis etc., but nothing major to attribute to the amount of pain I'm in. I have also had physio but didn't help.
I will definitely look into your suggestions, I will try anything to be honest.
Thanks again for taking the time to reply.
Any time - us mysteriously walking-wounded have to stick together!

All of the symptoms you describe sound just like pressure on the sciatic nerve to me, but no scan results does indeed make it a head-scratcher. I guess for a lack of anything clearer to go on, I'd come at it both from the fibro angle and from the spinal inflammation angle.

There's this insanely corny Youtube channel called "Bob and Brad" that you might find useful - if you can push past their painfully kitchy intro tune! They're a couple of doctors who do a lot of videos about spinal issues. I found some of their advice really helpful as I navigated my spine problems, and their videos really informative. If I think of anything else, I'll come back!
 

Fluffy26

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Thanks so much Jemima I will go and have a look at Bob and Brad see if there's anything applicable for me. Take care x
 

Rhyl

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I have incredibly bad low back/tailbone/hip pain which I was told was due to drying in my discs (and they have been telling me that for years). The last MRI I had, though, the radiologist said he hopes he has a back that looks like mine at my age, that he didn't think my pain was caused by any spinal issues.

I've been seeing a massage therapist, and she says I am *extremely* tight in my fascia and muscles. I think that this is what is causing my pain; when I alternate with ice and heat, it improves; it also feels better after a very light massage.
 

Forgetmenot

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Hi when I saw this I though of me .back wise,I have very bad tailbone pain .and I have pains down the legs ,now the dr has told me I have Sciatica.I was also told that it could be nerve pain,sadly that is something we have to suffer with fibromyalgia.Does your pain wrap around your lower back, or keep you awake when you lay down at all .
 

Charz

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Sitting on a donut really helps. What natural things are you taking for pain?
 

Forgetmenot

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I have Squashed disc in my back .nothing helps when I’m laying down .I’ve tired all sorts .only thing that helps is pain meds x
 

Charz

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Have you tried PRP or prolotherapy for disc?
 

Fluffy26

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Thank you Rhyl and Forgetmenot for your replies.
I have had massage but didn't help but to be fair I only had a couple of sessions so maybe I didn't give it a chance. I will try the alternating hot and cold though.
The pain in my lower back can be felt in my spine and either side of it. My back can hurt if I'm in one position to long in bed and my hips ache if I lie on my sides for too long. My back pain is at its worst when I'm standing and walking. When I go shopping I have a trolley whether I need one or not, so I can lean on it to relieve the pain.
My dad has bought me a back brace so I'm going to see how that goes, if still no good I'm going back to my GP.
Rhyl I'm glad you have found some things that help you and Forgetmenot I hope you find something that helps you.
 

Forgetmenot

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I’ve never been offered it
 

Jemima

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My dad has bought me a back brace so I'm going to see how that goes, if still no good I'm going back to my GP
Fluffy, do be very careful in using a back brace.

If it helps you manage your pain, that's fantastic. But, it's important to be aware that using a back brace frequently will lead to weakening of the muscles that support your spine. The weaker they become, the more dependant you will become on the brace because you won't have that natural muscular support to keep the pressure off your discs.

If you do decide to use it quite a bit - and in fact either way - I really recommend doing back strengthening work too, and trying to maintain some periods of the day when you don't wear it. In theory, strengthening your core can provide similar help, without the long term side effects. Something to keep in mind!
 

Fluffy26

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Hi Jemima, yes I had heard not to use a back brace for long periods for the same reasons you mention. But it doesn't look like I'll be wearing it anytime soon as my dad ordered the wrong size. I watched the YouTube videos you mentioned and once I got past their intro lol, what they said and the exercises they showed were really useful.
 

Yellowstockings

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I've been identifying with Fluffy 26's original post. I have lower back pain most days, and I'm afraid I don't have an exercise regiment these days. I was doing chair yoga which is helpful, to be sure. I've been taking 800 ml ibuprofen along with two extra strength tylenols for pain, almost every day now. I've never taken that dosage more than once a day and always on a full stomach, but I still worry about problems down the road. What afflicts me most with fibromyalgia is the lack of energy and the loss of days that, at 76 years of age, add up now to months and months, possibly a year of "lost" life. I used to just barge on and even forget that I had been diagnosed with fibromyalgia years ago. But I'm having to accept more and more my limitations. Currently I'm packing up a house that I need to sell and moving eventually to be closer to my kids. I never know when I wake up whether this will be a lost day or not. I now know enough about fibromyalgia to not push myself. That only makes things worse the next day and the next. I'm dying to get in the pool and swim and do exercises, but the pandemic has made that very difficult where I live. I hope others might identify with my post. Thanks for reading.
 
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