And now the spine

Boomer13 · 15. Sep 2013, 14:17

As if griping about it will help, but now the latest torturous flare has gone spinal. The pain is eye-popping. I won't even attempt to describe it. At least the peripheral joints are reasonably quiet and my new drug has anaesthetising properties. I am cursing rheumatic illnesses at the moment......

Counting the days until my rheum appt in October. I think they will be very long ones and, I hope I'm not building up my expectations that he will be able to do anything at all. I've got my GP flummoxed now. One disease or two. Oh I guess I should count the OA, three. I thought maybe I could start taking bets....

October is also set to bring a review of my disability support file. Always a source of extra angst but I'm getting ahead of myself. There's just so much to look forward to :roll:

Just wanted a short whine, I guess. Hope everyone is doing better today. Sympathetic hugs to those not.

Sending out many ((())).
xxAnna

DebbieT · 15. Sep 2013, 16:46

I'm really sorry Anna

Have you tried a tens machine on it? It worked well for labour pains with my 2nd child.

((((hugs)))) xxx

Boomer13 · 15. Sep 2013, 17:01

Hi Debbie,
TENS is something I haven't tried. For some reason my physio hasn't suggested it. Thanks for your suggestion. I will ask my doc about it; the neuropathy is over-stimulating muscles at the moment so I'm not sure if she will ok it. Will try, though

hugs, Anna

DebbieT · 15. Sep 2013, 18:37

Ure welcome.

Maybe something along the lines of a muscle relaxant is needed?

This may sound hippy-dippy but have you tried meditation using controlled breathing??
I ask coz it's another thing I used in labour & I found it worked really well. It calmed everything down & gave a semblance of control back!! I loathe being out of control :? My 4th labour was all concentrated in my spine as she was spine to my spine, excruciating!!! Well I was ignored wen I begged for an epidural so I did it thru controlling my breathing, eventually I was given gas & air thankfully!!

You've probably tried it but I thought it worth mentioning. Good luck with ure Dr huni.
(((( )))) xxx

stickywicket · 16. Sep 2013, 04:15

I'm sorry the spine is joining the party, Anna, and I hope the October appointment will be a profitable one.

dibdab · 16. Sep 2013, 04:46

No suggestions, just gentle hugs {{{{{{{{{{ }}}}}}}}}}}}}, constant pain is beyond miserable, and doesn't it leave us feeling isolated/

Hope the next appointment is the one where it all becomes clear and you get the help you need!!!!!!

Deb xx

barbara12 · 16. Sep 2013, 05:58

Oh Anna you whine away ...I have OA in my spine..so I feel for you on top of everything else you have....here are some very gentle hugs not much I know but at least you know I am thinking about yo0u (((()))xx

Toots · 16. Sep 2013, 07:29

Gentle hugs Anna, I'm so sorry you're feeling so miserable

Have you called to see if your rheumy appointment could be brought forward? I hope the docs some up with something helpful soon xxx

Kittkat · 16. Sep 2013, 10:22

Hope you feel better soon x

kentishlady · 16. Sep 2013, 11:26

Do hope the pain eases for you soon. I know what you are going through as the worst of my OA is in my back. Have you tried a warming a wheatbag if you have a microwave. It's the only thing I find eases the pain a little. Beryl. (((())))

Boomer13 · 16. Sep 2013, 12:13

Thank you for your hugs and support.

DebbieT; I do meditate, I started over a year ago and luckily my chair yoga teacher is also a meditation coach so she keeps me motivated to meditate by phone if need be when all I want to do is stay in bed. Meditation is very helpful, isn't it? Not hippy-dippy at all BTW, thanks for your suggestion and child-birth experience :shock:. Now not sorry I missed out on that....

Barbara, thank you I can feel the empathy in your words; yes, it is really awful isn't it ? And somehow indescribable the way it goes right through you. Sorry to hear you have OA in your spine.

Thanks SW, I'm hoping the appt is a good one too, sad when we are excited by the prospect of more and different toxic drugs...

Dibdab, I am isolated, both by choice before I was ill and now more so because of this #@*&%" thing. When I was well, I moved to a farm on an small acreage on an island, though there is at least a town nearby. Thankfully, we have the internet....

Thanks Kittkatt, I hope so too.

Hi Toots; I can't move my appt up sadly, I have to travel: bus, ferry, then another bus with a hotel overnight stay so it's not something I can do without considerable planning. Not complaining; I made the choice to see a rheum in a big city, who is affiliated with a university research centre. Have all but given up on docs from a small town, I have to say.
Thank you, though.

And thank you Beryl, it is awful, a 'special' kind of pain isn't it? :shock: --the back-- I have a wheatbag for my neck and am lying on a length-of- spine heat pad. I agree heat is really the only thing that helps. My sympathies back to you for your spine OA; oh how painful!!

hileena111 · 16. Sep 2013, 13:35

Hi Anna
Sending lots of gentle hugs.....((((())))) I have OA in my spine, kypho scoliosis and spinal stenosis so I sympathise with you

Love
Hileena

Mat48 · 16. Sep 2013, 13:54

Hi Anna. Sorry all is lousier than lousy for you still. I really so relate to your experiences although mine isn't in my spine so far apart from a wee bit of degeneration of the L5. I ended up spending a night in hospital last night - more on that somewhere else. But today the pain is foul and stabbing like electric shocks or brief agonising spasms running through wrists, a knee, a knuckle and it makes me almost sick each time. Having it in your spine wold be appalling but I am really hoping your rheumy makes things magically better for you somehow. Big soft hugs,
Mat xx

Boomer13 · 16. Sep 2013, 13:55

Thank you Hileena;

'Ouch' doesn't nearly cover what you have. I have kypho scoliosis too. How do you keep it from getting worse? I've been trying chair yoga and the coach has been helping with it until this flare. Overall, mine seems to have a will of it's own.

I have a friend with spinal stenosis. She suffers intensely, I am sorry you have this.

Boomer13 · 16. Sep 2013, 14:01

Oh Mat I am sorry for you. Hospital, really? I hope they were able to be helpful.

Thank you for your post. Yes, I have I have to admit with the neuro stuff and back pain, it's taken the illness experience and fear, to a new level.

xxAnna

hileena111 · 16. Sep 2013, 14:22

Hi Anna
I'm trying seated zumba.....but have missed the last 2 weeks because of pain.
I don't know how you keep it from getting worse...if you find out please tell me.
Love
Hileena

Mat48 · 16. Sep 2013, 14:42

I know it has re reaching a new level now Anna. I cant think of mych to say but offers of complete sympathy are there if you want them.

Hospital reminded me that sometimes uncertainty has its advantages. And the two doctors who spoke to me really did seem to sympathise with everything i was feeling and gave me good advice too. But I was kept awake all night by a mixture of a demented old man who shouted constantly and the heart and pulse monitor which bleeped loudly whenever my pulse became low. A kind of new torture was revealed that had made me very relieved to be home now. X

Boomer13 · 25. Sep 2013, 17:48

Thank you for your replies. Sorry I'm slow answering. I'm awash with my new drug and somewhat out of it, well, more than usual. I have my ability to sleep back again.

Hileena, I certainly will let you know if I hear of anything. My chair yoga coach was really helping me with being more straight in the upper spine and helping with neck and shoulder mobility, but then I had neuro symptoms and the entire spine flared and I had to stop. I hope you are back at seated zumba again? and, it's helping, yes?

I've had a lot of tests done ruling out this and that. The latest one is for AS. I don't think I've ever had such a bad flare in my spine as this one and it's lasting a long time. It's a sensory extravaganza !!

((((())))))Anna

Toots · 25. Sep 2013, 18:14

Hugs Anna x The only thing I can think of is that you're at least getting some sleep, small consolation though that may be given it's drug induced. Hang on in there x

Mat48 · 25. Sep 2013, 18:28

Oh Anna I do so relate once again. I've been on the antidepressant, Mirtazapine for a week and I've felt as though I'm wading through cotton wool.

I think it's working a bit because the panic attacks I was having while on the dopamine drug (Parkinson's) and for a few days after stopping it have ceased and I'm not feeling so hell bent on self destruction as I was. But I feel foggy and obliged to smile and say I'm feeling much better to everyone including OH.

The reality is that I'm waking each morning feeling sore and achy and unwell and incredibly stiff especially shoulders, wrists and feet. I've asked my GP to write to the rheumy and ask if I could have an MRI of my spine to check it's not inflammatory because I've been struggling with back ache and intensely locking and stiff thighs and pelvic joints for a year now and they all just flip their hands and say it's degeneration in lower back without even examining.

GP said that they don't generally send people down for MRI for a bit of lumbar trouble in our practice as it's too common and MRI, apart from being expensive, doesn't actually tell doctors that much about wear and tear. But I pushed her because I just feel that most of her patients don't also have a rather un-classic RA or polyneuropathy and they should be giving me some checks to help identify and broaden their search. My shoulders ache all the time just now too and so the connnections go on and on. It's like being in a bell jar sometimes. I really hope the zumba helps - I can't do it in any form just now because of back injury and sore achilles tendons - can't bear sitting down but can't bear standing up either! :x

Boomer13 · 25. Sep 2013, 21:50

Dear Mat;

I do empathise with you. We do seem to have some similarities don't we? I waited so long to have any diagnostics done, and especially with my back, as it mostly simmers along and is not too dramatic usually.

It's kind of a shock that I have a GP that's actually doing tests. IMO it would have been easier to figure this out 2 years ago and not wait until I was this much of a mess. I have been despondent many times and I think just became pain-overwhelmed and resigned to 'wait and see' at some point. Even to figure out what it is not provides very useful information.

It's not much of a trade off for you to now have aching and stiffness back again. I am glad to hear you are less depressed. It's so hard waiting and not knowing/understanding what is wrong. We all need some predictability and stability to feel safe in our lives and these problems sure rob us of that.

I'm living with the fogginess I'm feeling right now, as it's much better than what I had going on previously. It also seems impossible to be worried and anxious about anything much at all on the new drug, which is a state I'm not very familiar with. My GP promises I will get used to it soon and I'm holding her to that. Getting good sleep is also somewhat unfamiliar so that makes one definitely feel better mentally.

xxAnna

Mat48 · 26. Sep 2013, 02:59

Gosh your fogginess and good sleep isn't because of the same med, Mirtazapine, is it? That is exactly how I feel and what my GP told me too re I will get used to it!

I'm resigned to getting 3 tests done privately now - the MMA (B12), the T3 (thyroid) and the vitamin D. Of course I think my GP should be doing them but I can't ask again as it makes me sound obsessive. It is far too obsessing when you feel that not everything is being ruled out properly. I feel its vaguely outrageous to suggest and prescribe someone with a dopamine drug and then advise them to have a steroid injection when this person could just be suffering from a fairly basic vitamin or mineral deficiency or a hormonal one. But most annoying of all is the refusal to do MRI or ultrasound joints when I have RA and know that many people in the UK are even diagnosed this way! But the anti depressant is useful enough for the time being even if I do feel a bit soft soaped!

I'm so glad that you have a GP who is being thorough and will keep an eye out on how things work out for you. X

Boomer13 · 26. Sep 2013, 12:06

Hi Mat;

The new med is Baclofen to treat the body-wide muscle spasms and rigidity I'm having. It does work in the brain on neurotransmitters to "reduce brain function" well, that is certainly happening!

I'm not sure how Mirtazapine works; I'll go read about it. I got my back up (figuratively and unreasonably) about anti-depressants because a previous GP declared my symptoms fibromyalgia and wanted to experiment with these even though I had responded to prednisone.

Hopefully, my GP will continue to search out the cause, not just leave me on the med without figuring it out. I don't have any reason to distrust her. She's thinking if she can show AS, then I will be fast-tracked onto anti-TNF's by my rheum. If it's not then we can look at CNS causes, and well there are no good meds to stop that....I guess I'm not in a hurry to find out. The other rule-outs are autoimmune CNS disease and my brother's neuro disease, which is extremely difficult to diagnose without obvious muscle wasting present (it's not).

I've considered paying for my own MRI, but because of indecisiveness (and lack of funds; I don't know what it costs in the UK but here a private MRI is :shock: very expensive). I don't blame you for wanting peace of mind from having those tests; they seem very easily done so I don't understand why your GP won't do them. Ultrasound too. For your peace of mind, it would be worth doing them. Frustrating!

Boomer13 · 26. Sep 2013, 12:07

And Toots, thank you very much for the extra hugs sent. They are very much appreciated btw!

Anna

Mat48 · 26. Sep 2013, 12:21

Ach it's all so damned trying isn't it Anna? I spent all morning trying to find somewhere in Edinburgh where I could get these blood tests done privately without my GP finding out - unless the tests reveal anything untoward that is when I will most certainly be telling them! I finally found a private clinic and can go in early morning having fasted, for various tests. I emailed the bio chemist woman to give her all my last blood count and explain why I was wanting them done and asking her to think about which ones I should prioritise, if any given my symtpoms, meds and blood test results in July.

I'm feeling lousy again today - a little bit more each day - but my spirits are definitely less horrendous now I'm at least getting some sleep. I have all the same horrors about being told I have fibro by my rheumy. My GP was fascinated by this and said she did agree that it seemed either a catch all term for things rheumies couldn't quite locate ie undifferentiated inflammatory arthritis's - or else something that suggested the person had mental health issues re pain. I am actually very sympathetic now to friends and people in general who get labelled with ME/ CFS or Fibro because I've found it quite hard enough coming to terms with a diagnosis of RA, which doctors do recognise as a serious condition at least. It must be hell being told that your RA, AS or Lupus is Fibro only to later be found to have a serious and aggressive disease that has done untold damage while they dragged their heals and implied you were just a malingerer or someone with mental health issues. Ye gads it could drive you to have them - and in my case already has, even with a diagnosis of RA!

Anyway I've now sent all the blood test results off to said person and await what money I will have to pay for what tests. She sounded very good and practical and no nonsense - my kind of woman!

Your drug definitely sounds a bit more alarming than mine. My GP did say several times that this was secondary depression but I still felt apprehensive about the whole anti-d thing but I needed some sleep and was becoming extremely paranoid and irrational without it. After Pamiprexole I have decided that I'm better off drug free for the most part but not without any sleep.

Hey maybe we should go for private MRIs together and share neuro, rheumy tales with each other ad infinitum afterwards?!

Mat x

Boomer13 · 26. Sep 2013, 23:32

Sure! Great idea!

Mat48 wrote:

Ach it's all so damned trying isn't it Anna?

Yes indeed it is, Mat.

I am sorry you're feeling lousy again.

xxAnna

And now the spine

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