The Back Pain Emporium, Internet Shopping, Drugs and Dealing with Doctors. Thread 6.

[MatildaTheRedNosedReinCat]

For anyone experiencing back pain it can be a very scary time. What is wrong? Who can help? How long will this last? We,on this thread are here to support you;offer empathy and help to navigate the almost impossible task of getting a diagnosis and the right treatment.We are not doctors but people who have trodden this path slowly and painfully. We also chat a LOT and welcome all newcomers. It is strictly non competetive regarding pain and no niggle is too minor.

Those who have long term back problems know that the best way to help manage back pain is to internet shop for shoes, bags, and back support devices. Those who are new to back pain, these are important lessons to learn. And here within this thread is where you will learn those lessons.

You will also find other helpful advice on pain management, different treatment options from hydrotherapy and physio to surgery, experiences of others navigating the big and scary medical world, both private and NHS (and abroad from the UK) too, as well as issues around work, being a parent while managing pain and disability, and the impact on the relationships around us. Not to mention the pain of dealing with claiming disablity benefits .

Between us all, we have a huge wealth of knowledge and experience, and more than the practical advice, the jargon and information, we know what back pain is like, how much is affects everything around us, and sometimes, all we need is to have people listen who Get It.

We talk painkillers regularly,sometimes drink wine , have hot water bottles and wheat bags galore, and hold hands a lot. It's potentially all very Unmumsnetty as we do actually show some lovin' from time to time, although we Never Ever call each other hun.

If you have advice, need advice, need a hand to hold, want to do some shopping, then come in. We are friendly. We talk a lot. Come in, have a brew and say hello

This is our 6th thread, here is the 5th, which has links too the others:
www.mumsnet.com/Talk/general_health/a2203923-Back-Pain-and-Internet-Shopping-Thread-Number-5

Nah - the dog stays downstairs...there are enough of us snoring up there as it is. Funny how I can hear the children snoring now DH is away.

I called the secretary and actually managed to speak to the ESP who will be doing my injection.
I am having manipulation under anesthetic along with a corticosteroid and local anesthetic injection in the coccyx joint and then around the coccyx joint.
She looked at my MRI while I was on the phone and there are no disc problems at all so I finally have a diagnosis of coccydynia and the success rate for this injection is 80% but I can have one a year if I need to.
I will also have an injection into my lower back which will be a nerve root block. Success!!

That's great, Tickle. So glad you've got some concrete information & that they're going to be focussing on the coccyx problem.

Thank you Loon, only 13 months it took to get a proper diagnosis! Am so so relieved. It means i can focus on sitting properly and trying not to put too much weight on it. I've got a coccyx cushion at work now as well so I'm feeling so much more positive

That's brilliant news, tickle. So very strange how different it is in different areas of the country. And if this is so successful it does beg the question as to why you have had to wait so long to be offered it, but let's not go there!

Thanks Matilda, and yes, I love my Dr but I think actually he failed me by not referring me earlier.

Hi there,

May I tentatively peek my head in please?!

I've had a terrible year with something not quite right, some of which could be thyroid related although I'm fairly well managed there. I've now got an appointment for a rheumatologist. Gp was going down endo route initially but it's nothing in that area. I'm not recovering from a slightly low thyroid level. I lost a lot of muscle and wasn't maintaining weight. Pain has been unbelievable and then I had sensory issues too and strange pains in my spine, ribs and Si joint (which I now know has been an issue for years)

I used to manage any back issues via swimming and yoga (a physio type called forrest) so never saw gp about my back as it got better if I kept fit. Hip was sometimes an issue too. More recently it's also been a very sore wrist. PT said it was tendonitis. He was seeing me about my Si joint at the time too. I know know he asked about rashes etc linked to ankylosing spondylitis. And if the buttock pain was alternating or he same.

I had so much pain then I couldn't tell! And symptoms of fibromyalgia too.

I then started getting regular night time flares where my spine felt like it was tightening up, itchy and painful like sunburn. A bit like restless leg syndrome. And then extremely out if it afterwards for a week or so. Memory loss etc. some extra iron and coming off sertraline has begun to help this.

I'm not making much sense sorry!

I'm now suspecting AS. Does anyone else have it here? The reason being that I feel like it's as if I have tendonitis throughout my spine and ribs (and wrist) which sometimes flares. I get woken at night and can't lie still. I've always had issues with fatigue. And, slowly, I'm finding that yoga and swimming are starting to help me again, though it's taken a fuck of a long time! I've had plantor facis (sp?!) in the past. Fatigue has often been an issue for me.

A new bed has started to help with the sleep stuff.

I CAN equally argue it's all be the awful result of long term low thyroid, sertraline side effects, no muscles, low iron and some hypermobility (physio showed me where I am) and I've got major damage everywhere, taking a long time to heal, which is gps thoughts. He thinks the hypermobility is the main issue. I know that without the correct level of thyroxine my muscles seem to disappear. Ergo, no muscles, hypermobility issues increase. And hypermobility could explain fatigue.

Over new year I realised I'd started to hunch over and curl up. I can't wear a bra at the moment. I've been working on pulling my neck back, opening my chest and expanding my rib cage.

I'm thinking it may be helpful to join you for a brief ride if that's ok? I'm thinking I may need expert advice to help me through the appointments.

I'm going to mention AS to him today but don't know if i should or not?

Hi clarella, sorry to hear your problems! they sound very painful and frustrating. There are a couple of posters who dip in and out who have some rheumy diagnoses, I will try to find them for you. Most of us here do have injuries but managing symptoms will be very similar,mso do come on board and join in. If all else fails we are excellent and mindless chat.

Tickle glad to hear you have a diagnosis and a treatment plan, (and disc troubles ruled out) and not too long to wait.
Ally I hope you can taste things. Without taste some foods horrid. If you are eating well I guess you have at least some taste buds working.
Clarella I think there are others with hypermobility too. I have some minor hypermobility (knees hips) but not HMS. Is it your GP you are seeing today? I think there are blood tests that can be done by the GP if inflammatory illness are suspected. I had some done whilst waiting for a rheumatology referral. I guess whether you ask directly or more indirectly about AS depends on your GP.
I have found a couple of things helpful for night pain waking (apart from standard pain killers) - although nothing worked instantly. 1st making sure I could not sleep on my tummy - I used a pillow between my knees, secondly my specialist prescribed a very low dose of amitriptyline before bed for its neurological pain help, and lastly magnesium supplements (or regular Epsom salts baths before bed) for its affects on relaxing tight muscles. There is also a magnesium oil skin spray - but found it stung (a sign of deficiency) so used the baths instead. I hope you get some help and start to feel better. I have CFS and a dodgy back and get joints flair up from time to time- and have mostly self managed my back for decades. I know we are all different - but sometimes it is helpful to hear what has helped for others.

Tickle Hooray!
Clarella Nice to meet you. Sorry not my area but poor you - all that sounds horrendous.

Does anyone know how Pavlov is getting on?
How about you Ally have you handed in your notice yet?

Wow thank you for your replies! And your warm welcome :)

Forgive me if I lurk a little at times and ask lots of qs. I'm trying so hard to get well again.

Maggiso I think I'm half way getting there! I've been finding Epsom salt baths helpful and magnesium though it's tricky as I have to separate them from thyroxine, which I take at night hence the Epsom salt bath. If thought about magnesium oil so yes will try that too.

A friend has suggested CFS, does a rehumy diagnose this too? I feel a lot of this comes from my back though, or the tendons. I feel like they're trying to repair them selves.

I've been given naproxen, but hadn't noticed much effect - I've just chatted to my neighbour who says he has to build the naproxen up for a few days to deal with the arthritis in his knees. Does anyone else find this?

I think I will try amytriptine if this continues much longer. I needed to be free of the sertraline for a while though. It's side effects include muscle issues so gp thought it best to rule that out. Sleep appears to be better with this new bed. Which is a big part of it I guess!

Does anyone else find ferritin/ iron can be a factor in how well they feel OR indicate issues?

Will ask GP about AS and my reasons why, though as I say, I think I can reasonably explain it under hypermobility too, over straining things. He seems to think hypermobility can cause a lot of issues. My son is now 2 and I never really recovered from the c section that well.

Either way, a lot of it rests on getting stronger and fit, though balancing out with rest too.

I'm so frustrated, I've not worked since October. I teach children with autism so I need my muscles!

That's really interesting about sertraline, I've been on 150mg a day for ages....

Welcome Clarella

Yes Maggs thanks my taste buds are intact and I am eating like a horse - hope it slows down soon lol or I'll be on the telly - 50 stone woman craned out of house!

And yes Berrie thanks I handed my notice in yesterday, quite prepared to work the 4 weeks notice but was home today by 12 noon. I should have seen it coming but they always surprise me with their cackhandedness (although apparently I was a valued employee - first I heard of it! ) - am gone now though yippppeeeeeeeeeeeeee!!!!! And I got my measly bonus first haha

Ally Hurrah!!!

What a result. I hope they laid on a lavish leaving do and gave you a gold watch . So, what are you doing next?

Clarella, one, among many things that I find helpful is Alexander Technique. It's fab for backs but many other problems. If you can possible find ten minutes a day, do This. I love it. Another thing that's been very helpful was a Pain Clinic referral although you may need further investigations into what the cause/s of your problems are. It sounds very complex. Certainly all the things you mention seem to often go hand in hand. I second low dose Amytriptiline at night for peaceful sleep. Before I started I had some nights with literally no sleep at all. I took naproxen for nearly three years and wasn't all that sure if it was helping or not ( take stacks of drugs) and I stopped recently. The only place I've noticed a difference is my dodgy knee . It does need to build up, though.

Tickle I don't know if it is that or not- I liked what it did to my head! It does affect thyroxine absorption or processing or something though, so we were working on the possibility it was that in the mix. I'm starting to think it's all been a combo of low thyroxine and not enough iron. Wounds weren't healing and I know you need iron for muscles. Whether sertraline contributed to any muscle wasting I'm not sure.

I've got some iron tablets and a referral to physio. I asked the gp re ankylosing - he said my esr (? - inflammation level?) was perfect last May so didn't think it was possible. But reiterated hypermobility theory as well as discussing my core - I don't think it ever really recovered post v section.

I feel it might just be this. There's very little I can do. I avoid heavy doors or any kind of thing which puts pressure on my shoulders, spine etc.

Thankyou Ally pally!

Sounds like you're happy to have left your job?!

clarella
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www.dontturnyourbackonit.co.uk/about-back-pain/inflammatory-back-pain.html

Don't listen to GP. sorry but AS and psoriatic arthritis are both seronegative arthritis and don't necessarily show in blood tests. YOU NEED TO SEE A RHEUMATOLOGIST sorry for the shouting. I need to do bedtime. Back later. I have psoriatic arthritis for definite and probably a side of anklosing spondylitis and guess what auto immune diseases hang out together so the whole thyroid thing fits in too.

Don't worry theres great drugs about

Thanks festive. The esr (?) test was in May. It's gotta whole lot worse since then! But yes he's chasing rheumatology for me.

I probably need to stop bothering about it. I'm just pretty disabled at the moment!

Ah I see so that blood test will only show up if disease is active. At the time I went to Dr about my wrist which was very painful and a painful sternum.

I may ask for a print out of what they tested at that time. Thanks again.

my esr and crp are high for me at 30 / 15.thus is generally seen as within limits for normal people.my gp knee me well knew something was up and just kept testing. the pattern wad they just went higher.

sternum pain could be costochondritis painful Bugger.

you will feel awful with these conditions.You are not just in constant pain in multiple areas but the inflammation makes your body your whole system run below par.Jesus the fatigue. I'm only realising how bad I had got now that it's finally under control. be kind to yourself.

ally put for your mn work leaving party

does anyone else wish we could edit posts bloody typos

Right, as a consequence of being a stubborn bugger and wanting to do football training I am a bumbling ball of pain meds and brain fuzz so a quick hello to everyone and a try and be helpful moment for clarella.

Have you had the blood test to check for HLA-B27 yet? If this is positive it will speed you along to an AS type diagnosis, if it is negative it doesn't rule it out but makes it less likely. There are lots of different inflammatory arthritis diagnosis so as mentioned (shouted? ) above you need to see a rheumatologist. The symptoms cross over so many different issues with bodies, whilst you are pressing on at your GP for the above blood test you need an x-ray of the sacrum and if you have something good to blackmail him with an MRI with specific protocols is the gold standard to diagnose but again if if negative doesn't rule everything out. It's not easy but you need to be bloody minded and keep on at them until you get your answers. What festive said too, they all hang out together these bloody things and unhelpfully don't respond to the basic test for rheumatoid arthritis (which is the glamour child of auto-immune arthritis because it has a blood test, not that that is 100% either...). I am chocka full of morphine and tramadol but will be back in the morning when I have a functioning (for me!) brain. Do not fear, we will help!

Matilda my lovely I am gutted the patches haven't worked for you, onwards and upwards in the words of my pain clinic consultant 'don't give up there are lots of different things to try'. I am starting a yoga course next week to learn meditation and mindfulness and not an awful lot of bending or resting weight on my shoulders as recommended by the same consultant. I am SO sure I will fart and show myself up as a philistine not ready for such refinements .