Pain

[mel-maelo]

Ah God!!! I'm in so much pain,,, agony doesn't

even begin to describe it. Finished steroid short

emergency course yesterday. I don't know what to do with

Myself... It huuuuuurts soooo much.....

[Hidden]

Can you get yourself to the GPS today. No one should be in that much pain with no suitable meds... I consider myself lucky if I can go a whole month with having to go back to the GPS...Normally it's every week or two weeks while they monitor new meds then they take me off them and try some thing new...

My picture should be a guinea pig not a fish

Please try and get seen

VG x

[mel-maelo in reply to Hidden]

Hey VG,

Nice to speak to you again. Cannot get to gp. Going to pain clinic this Friday. You always comment on the amount of pain I'm usually in - is it not normal for everybodyto be in this pain all the time? You are making me think tthat it is really not necessary. (Not having a go, really want to know) I use the Prednisolone (spelling) in short fairly high doses to try and whack the flare up on the head. This time the dose was either no longer enough or the course too short as I am really in an insurmountable amount of pain definitely a 5/5 on the scale.

HELP!! I need advice. Input. Anything. Please

[Hidden in reply to mel-maelo]

I don't think it's normal to have that much pain for so long nor is is it acceptable... I have dosulepin 75mg at night along with 0.5 mg clonezapam that relaxes the muscles and send me off to sleep nicely... Day meds are a problem as I can't tolerate many.. At the moment I am on predisnolone 10mg..not much use as yet. I have emergency diazepam 2mg that I take if I really need up to 3 times a day i try not to use it ...and paracetamol can't tolerate any opoids its on my notes not to be given any I think the night meds are so good they actually carry me a lot of the way through the day as my pain is constant but bearable as long as no one touches my ribs .. They are far too sore to touch but its 23 years of chostochondritis I am used to it, i also get trigger point injections every 3 months at my local pain clinic in my neck and shoulders ...when I do have break through bad pain I am straight off to my GP if nothing I can take settles it back down... After 23 years I won't accept being in bad pain... I know I have fibro , I know it can't be cured, but I won't suffer in really bad pain, fortunately my GP and I get on well and he knows I don't go unless I am in worse pain than usual...

Hope the pain clinic helps on Friday...

VG x

[mel-maelo in reply to Hidden]

Thanks for this VG, I will mention what you have to her. At the mo I am on 900mg Gabapentin 3x p/d; 5mg Diazepam 3x p/d; Oxynorm 40mg 4x p/d for breakthrough and have just dropped Oxycontin SR from 290mg2x p/d to 30mg 2x p/d (which is very stupid!) On top of that I am on other meds for my bowels etc oh and of course - lots of vit D

[Hidden in reply to mel-maelo]

Ahh yes I forgot to add the predisnolone is for my arthritis ... But my GP is hoping it will work as an anti inflamatory and help my chostochondritis as well

[somernight in reply to mel-maelo]

Omg this is a lot of meds man made stuff sometimes helps but please try honey every day as much as you want cinniman 1 tsp. These help my flare ups but you have yo take it every day. like very-grumpy I find the diazapam is good at night. I suffer 14 trigger points and arthoritis l5-s1 but its important to not let the pain take over your life and or meds. Mind state is very important. I hope you have a better day and take back your nody from pain. I will try to post more natural remedies if you would like.

[mel-maelo in reply to somernight]

Apparently I suffer all the known trigger points, is this quite bad? Been like this for 14+ years now

[somernight in reply to mel-maelo]

I also have DDD and IBS, bulge disc its scary stuff but listen to your body when it wants rest, and try to keep stress down. Another natural stress helpet is gaba its a chewable great stuff.

[mel-maelo in reply to somernight]

Gaba??? What on earth is that? Sorry don't mean to sound ignorant

[somernight in reply to mel-maelo]

Iol its ok gaba is a natural herb tablet to help you relax. Fibro and ibs people should be stressed so thats what i take whsn i start feeling over stressed.

[mel-maelo in reply to somernight]

That's great, thanks Somernight. I will giveanything a try once

[Hidden in reply to mel-maelo]

I know this sounds crazy but until today readimg this I was beginning to think I was a drama queen hope they can do something to help soon petal

[rasfire2013 in reply to mel-maelo]

Blessed Peace and Love

Just reading what your you shared and sad to say I have no advice no help. However what I have in buckets is Heart and love for all thing so then I is sending some to you.

Rastalove

[mel-maelo in reply to rasfire2013]

Thank you so much Rasfire that means more than you could imagine x

[5631205st in reply to mel-maelo]

I have been in agony most of the last 19 years. Before that, I was taking 12 advils a day. But with Fibromyalgia, one has IBS and irritable everything else. Two years I was in the house in such pain, I couldn't stand clothing. Slept with my feet off the bed on top of the covers. This is a very lonely illness...... you find out who your friends are (not)

Sympathy and prayers for you - I am having a terribly painful night as I spent ten times more energy on a family crisis than i should have and now have to "pay". If it hadn't been for my trying Lyrica for the third time and letting it have a chance to work, I think the pain would push me to finally end it. I take Lyrica and Hydrocodone. Yes..... now that opened a lovely door! We have all sorts of non-medical types with opinions about us becoming "addicts" without one single rational thought to the agony we are in. No concept that we are being tortured and the meds for us bring our pain levels more to the norm.... hence, they don't know much. Eight hours of pain courses is what most doctors have to take. Do any of you think that is adequate or show that they give a damn about PAIN. When the pain starts reaching for new avenues like migraine for weeks... I take meds for that too. If needed I take a Medrol pack to break the pain cycle. It wouldn't hurt to make sure you don't have any pinched nerves contributing to the torture as well. I was dismayed to have to undergo bi-lateral carpal tunnel surgeries, a thumb release and six spinal surgeries that left me in bed another 4 years! I was a ballet teacher for 40+ years. Like a diabetic, I need pills to survive. All the best to you tonight. I'm using heating pad... (when I broke a rib a doctor in a top hospital whispered to me: take an advil along with your tylenol. What an idiot.

[rowantree]

Oh poor poor you. Thinking of you. That's so not ok. Let us know what the GP does, are they good? Understanding? Did the steroids help?

[mel-maelo in reply to rowantree]

Hey

Actually I have an amazing GP. He knows the situation so I kinda feel that calling him every 5 minutes is so unnecessary... Sigh!! Don't know what to do for the best

[somernight in reply to mel-maelo]

Pain is horrible sending hugs see if you have been tested for RA causes a lot of pain same way as fibro. My daughter is 19 and has RA hips to feet her pain is so bad. RA is Rumatoid Artheritis sorry spelling is wrong and there is blood work that can be done. good luck

[mel-maelo in reply to somernight]

Apparently I don't have RA. My hips are so painful that just touching them lightly is like being kicked by a horse. They think it could be root nerve damage from my spine as I have degenerative disc desease. On MRI and xray my hips are healthy. I have also had bone density tests done for osteo but all is fine. It would seem that Mr Fibro is stomping about in my body at will... Oh, also had a lupus blood test which came back negative (my hair has fallen out in hand fulls) so I guess the rheumatologist was correct in his diagnosis.

[LindseyMid]

I would get back to your doctor (or get them to come to you if you can't get to the surgery).

Did the steroids help? Steroids are not a treatment for Fibro so if they helped, that indicates that something else is going on, even if it's only something that could be considered a symptom with Fibro, such as Myofascial Pain.

[LindseyMid in reply to LindseyMid]

I just cross-posted having not refreshed my page, sorry about that.

If you need Pred for flares, that is a BIG red flag that something other than Fibro is going on. If you don't already have an inflammatory/autoimmune condition diagnosed, then you need to see a rheumy asap.

[mel-maelo in reply to LindseyMid]

OK Kinds, I will get this all sorted in the morning when I see the pain doc

[mel-maelo]

Soz - Linds

[Hidden]

Oh mel I really do feel for you I knownyou csn sit stand lie diwn walk eithout causing pain sending you loads of cyber hugs and a few giggles

[Hidden]

Yes I have all the tender trigger points but by far the worst are all the ones in the upper body etc thats how I got the trigger point injections for my shoulders and neck... just read the post about cinnamon every day and of course I can't take the stuff , goes down and comes straight back up... Just like honey ... I am fairly laid back about my fibro , but some days I wish the rest of my body would just be normal so I could have conventional meds or try natural solutions.

VGx

[ladymoth]

Plenty of good advice, mel - I think you should tell the doc that you are having no pain relief.

I don't know what to suggest - except to agree that Dosulepin particularly has been a godsend to me. A good dose at night time means that I can walk fairly comfortably the next day, tho' it's not specifically a pain killer!

Maybe your doctor would let you try that?

Hope you improve soon,

Love Moffy x

[mel-maelo]

Hmmmm... That's what I was thinking. I will keep you posted. x

[Malwimmy27]

That's awful to be in so much pain. Really hope you get something to ease it when you go to the pain clinic. X

[mel-maelo in reply to Malwimmy27]

Thank you Malwimmy. I have had this amount of pain for so long that I have learner to just try my best to muddle through although every day involves tears at some stage or another when I cannot carry it off any longer and I just constantly want to find something to chuck down my throat to relieve it.

Well I think I have gleaned a fair amount of great advice and suggestions which I will put to the pain team tomorrow.

Feeling the love guys, thank you so much.

xxx

[mel-maelo]

That just made no sense at all LOL!!

[loppyloo61]

Hi, So sorry to hear your in sooo much pain. I"m mailing you from my bed as I"m too i horrendous pain. Been stuck here for 2 weeks as had flare-up, which was folllowed by a nasty bout of shingles and UTI. I also have 3/4/5th bluging discs which don"t help matters! I can really empathise what your going through I feel like smashing my head through the window with pain @ moment. Did you say your on Gabapentin? I was on that but Specialist changed it to Pregablin which has helped with the fibro pain immensly (Its all about costs as Pregablin is X 4 as expensive as Gabapentin!). Just a thought maybe they would consider you for this medication. My son also has fibro and Reflex Sympathetic Dystrophy, which in a nut shell is the worse possible pain there is. On the Mc Gill Pain Scale RSD is worse pain than cancer, childbirth ect. and he is in this pain 24/7 because its such a rare syndrome, its also progressive incurable fatal with the other syndroms he has. He is on Pregablin (amoungst other poitient meds) but found it benefitial too raather than Gabapentin.

I wish you good luck for the Pain Clinic on Friday, perhaps its worth a mention to them?

I take combination, Tramadol, Co-codimol, Transtec Pain Patches, Lignocane Patches, Diazepam and the dreaded Oral Morphine, should"nt say dreaded as I keep it for Emergencies (which I"m now taking) as if I took it for everyday pain I"d have no where left to go.

I thank God for my understanding GP who prescribes it for me otherwise I would be hospitalised, as thats all they can give in hospital is Oral Morphine!! At least I am in the comfort of own bed @ home.

Wishing you well.

In my thoughts & Prayers x

God Bless you x

Keep us posted please as to how you get off in Pain Clinic, as I was suppose to be @ one Today but obviously had to pospone!!

They are going to re-appoint me!