At My Wits End

[emmie]

never thought would say that but i can't get to grip with what is going on.
had base of spine pain for months, it started as a dull ache and has progressed to something i don't understand nor can get the pain under control. Pain radiates from the neck right down the spine, bending sends burning sensation across should blades, down the spine, back, to add to this can't bend hardly nor can i get footwear on well as it's all painful. throbbing pains downs both legs and like electrical shocks down into ankles and toes, especially the big toe either sitting or walking.. I have seen the GP number of times who has given me Naproxen, but it really doesn't help much. I have been waiting to see a Neuro team, for some reason the GP finally tells me that the Neurosurgeon won't take up my case, i didn't ask to see a Neurosurgeon! only someone to explain and have a look at doing scans to see what is going on, so now i have to wait more weeks to see the Neuro team.
left knee swollen again and painful, and to add insult to injury have the same blasted pain across the bridge of the nose and down the face that have had for months. i haven't felt as bad as this in years,

[emmie]

does anyone else use this,

http://www.drugs.com/naproxen.html

[Robinia]

I have fibromyalgia and I know from experience the pain can change and become much worse as time goes on. I have the extreme burning in my arms and legs, as if straps have been wound round them and pulled tight, it keeps me awake sometimes. I know women in the local FMS support group who are on cruches and in wheelchairs, I hope and pray I never get that bad.
I also had the wonky pelvis thing which had me walking with a stick for weeks but that was diagnosed and helped enormously by an NHS physio.
Never tried naproxen, amytriptiline has been suggested a couple of times but I haven't resorted to it yet. I avoid heavy duty painkillers because of IBS, I hate that more than the pain. I even went to see about hypnosis but it was very expensive and I didn't feel any connection with the therapist, he'd probably have needed a sledgehammer. :) I wish I had the answers.

[emmie]

i remember how bad it was, from a fit, healthy individual i went to a semi invalid, this was more than 20 years ago, in a matter of months, there was no help from GP then, so i went private, but that was a time when i had company health insurance.

[Eve]

As others have said a lot of it sounds like the fibro.

I've found osteopaths great in the past so definitely worth a try. They can tell all sorts of things and, like physio, the asking and looking is important. They need to get an idea of what the problem is before they start to try to treat it. Just little things like your general posture, the way you stand, walk and respond to simple things can tell a lot.

There may be other options they may think could be suitable like acupuncture.

They can also help with aides, including occupational health referrals, and could look at things like aides to help you get footwear on, grabbers etc...

Physio could also help with aides for getting about like a walking stick.

It can take time and effort though. I found out from physio lately that my pelvis is tilted and I have lumbar lordosis, as well as the knee issues they are helping me with, and have given me exercises for it to try and counter the tilt and work and strengthen the muscles round my knees to try to help it and associated pain. Don't underestimate the impact that parts of your body being out of whack can have on you generally.

Has anyone suggested any longer term pain relievers such as amitriptyline or even gabapentin or pregabalin? A pain clinic may be a good idea.

If you are getting swelling, has any inflammation been picked up in any blood tests?

[anneasquith]

id be asking gp for MRI of spine >

[emmie]

haven't had any blood tests, and if it's a herniated disc, and quite frankly who knows, the pain is that severe, its all out of whack. the bones hurt in ankles, knees and hands, spine especially. I remember not being able to walk far with the fibromyalgia without getting out of breath, it's not like that now. Its just the pain that makes it so bad.

[emmie]

anne, i am absolutely claustrophobic... I did try an MRI scan years ago and got to the screaming point before the camera started its clicking.

[anneasquith]

I can understand your fear of the scan, but it really is not that bad once it starts, nor will it take very long, and be serious if you get a diagnosis from the scan which will help the pain. id say it would be worth it.

[boxtops]

Emmie, print out some stuff about fibromyalgia from the internet, and take it to your doctor. Insist on a referral for a second opinion, it's your right to do that. Alternatively - do you have a walk-in centre near you? There is nothing to stop you going in there if only for the acute pain - they may be able to get things moving for you in terms of seeing the right physician. Or change your GP - you have the right to do that, too.

[Eve]

Well, while you are waiting to be seen you may as well do what you can to help yourself. Are you currently in physio? You could ask for an occupational health referral or consult an osteopath or try something like acupuncture. You can get walking sticks off the internet, similarly with other aides. It does help getting one via physio though as they can make sure it is right for you.

Attitude helps a lot too. I'm always in pain, even with medication, and it can get nearly unbearable and overwhelming sometimes but try to find ways to also help yourself.

[Eve]

Could they not give you some kind of sedative for the MRI scan?

[boxtops]

emmie, could you afford to go and see a pain consultant privately just for a diagnosis? You can still go back to the NHS for any treatment - but you can probably get to see a consultant in a few weeks, rather than months.

[emmie]

boxy i did have it years ago, after very protracted doctors visits, private bloke gave me the diagnosis

anne, i was given some diazapam i think, it didn't help....

[emmie]

boxy i am seriously considering it. had hoped that after almost 5 months someone would have helped.

[emmie]

found the address of a walk in centre, so will look at that as an option.

[Eve]

Could you not ask if there are any alternatives though, if you need a scan?

Awful as it sounds, many tests are unpleasant but sometimes needs must.

I can't remember my lumbar spine MRI being that long - not as long as some others I've had.

What is the stuff they give people when they have endoscopies and such? I have read some people on here say they don't remember a thing from theirs.

[boxtops]

If you see a consultant, emmie, I would see it as an investment. If it proves that your GP has failed to diagnose correctly, that is a serious defect. I've done it myself, gone private for a consultation then taken the results back to the GP. A consultant's letter to the GP about your condition can make a difference. It could be that your GP just isn't experienced in your condition, they don't all specialise in everything -do you always see the same GP? - if not, see a different one in your surgery (and the younger ones are often more clued up than the seniors).

[Ann]

A friend's husband had similar symptoms to yours Emmie and he was fobbed for for ages, like you. He waited until his GP was on holiday and saw a different doctor who quickly diagnosed a trapped nerve in his back.

[Ann]

PS I do hope you feel better soon, it's so awful when you are in constant pain. x

[emmie]

only seen the same one twice in the last while, it's hard to get appointments, i will look at the walk in centre... and a private consultant if that is what it takes, if the gp's hadn't messed up from the start i might have had some help by now. they were supposed to send me to a muscular skeletal consultant, instead i got physio, which didn't help, the person actually hurt me, looked bored, and indeed sent me away with a sinking heart, which isn't supposed to happen.