Could do with some advice...

[ZoeMC]

Hi, I'm not even sure if I belong here, but I have chronic hip pain with no real explanation; it's been going on for just over a year now and I'm exhausted. It's really wearing, especially thinking that the doctors/NHS physios aren't listening and doing anything to practically help. It's like being in pain just isn't enough; if there isn't a name they can understand, they run a mile and shove you on painkillers; what am I supposed to do when even codeine doesn't work? Thanks!

[biffbrain]

Hi zoemc I had the same problem. Started in both hips then my back . Went to physio for 6 months . Was told I had stiff muscles and was given exercises that I mostly found impossible . During a physio appointment I was asked to try and exercise . I couldn't do it ton the point of tears. Physio then referred me to pain clinic . Eventually 18 months later I got a fibro diagnosis from the pain doctor whose a specialist. Took a long time to get but at least I can be treated now. Although nothing eases the pain at all. I'm not saying u have the same as me I'm just letting u know it can take a long time to get a proper diagnosis.

Keep persevering ! It's not easy I know.

[Victoriapain in reply to biffbrain]

Hi have you had any tests done? X

[biffbrain in reply to Victoriapain]

Hi Victoria pain yes I had loads done . I also have lung disease. I fit all the criteria for fibro. Although the pain in my back does concern me at times due the reason that I struggle to bare weight on my right foot most days . The more weight I put on it the more my back hurts on that side . I'm due back in pain clinic in 8 weeks . I've had x-ray but not scan on that area . If I remember I will suggest it .

Have a great day and thanks for asking

[Victoriapain in reply to biffbrain]

Xray does not show alot compared to a mri, hopefully then you have some answers. Could be a number of things, slipped disc, nerve issue etc.. What medication have you tried xx

[biffbrain in reply to Victoriapain]

First of all I was on co-codamole for 6 months until I was tolerant of them so next was on tramadol for 18 months till I was tolerant of them. Weaned off them and put on gabapentin. Didn't help at all. Was on 8 a day. Weaned off them. Tried anti inflammatory pills can't remember the name of them . They did nothing as well. Now I'm on duloxetine 90mgs a day and 50 ametryptiline at night . Still no pain relief at all .but pain said I might as well come down to 10 mgs of ametryptiline cos I can still sleep on that dose .higher doses are meant to ease pain but nothing seems to help me . The duloxetine helps with depression. I didn't think I was depressed really untill I took them and realised I wasnt crying every other day!

They do help my mood a lot . I also had 6 steroid injections bout 18 months ago with no affect . I also take 3 inhalers for Copd . Folic acid cos I'm deficient in that and b12 jab every three months for pernicious anaemia.

I was diagnosed with that about 6 years ago and I do know that the longer it goes untreated it causes nerve damage and if left untreated for life it can be completely crippling even fatal .

Maybe I have damaged nerves because of that. I have no idea how long I had it before diagnosis but I had the symptoms of it for years before it was noted. Sorry for long reply !!

[Victoriapain in reply to biffbrain]

Have you tried butrans patches?? I tried allsorts like yourself over a long period and nothing worked. These don't take all my pain away but some days are not too bad. Just a suggestion x

[biffbrain in reply to Victoriapain]

Thanks for that .I will ask when I'm there in 8 weeks .

It's worth a try definitely

[Marylyn in reply to biffbrain]

Biffbrain you are correct about vitb12 which majority of Drs can't even diagnose .My opinion 3 mths is pathetic as it is water soluble & is flushed out daily so how do they expect to treat continuing nerve damage.My hubby & I are MTHFR on weekly methyl inj ,Folate ( folic acid the body can't use also it disguise the cells masking b12) Vit b6 .I was acutely ill 4 yrs ago worked as midwife exposed to nitrous oxide laughing gas but a vegetarian diet or many meds can cause malabsorptionof b12 like anti acids ,statins,hormones,antidepressants,beta blockers, chemo, steroids.You can buy Solgar sublinguals b 12 online to have between injections.Watch videos on b12awareness.com for lifesaving info or Dr Ben Lynchs website for inherited gene MTHFR .

[biffbrain in reply to Marylyn]

Thanks for that info. Sorry for late reply. I haven't logged on for a few days . I'm not sure what sublinguals are but I will Google it. Thanks again.

[biffbrain in reply to Marylyn]

I googled it but I can't take oral supplements because my stomach can't absorb the b12. Thanks for the advice tho. It's appreciated 😊

[Marylyn in reply to biffbrain]

Sublinguals are absorbed under the tongue like heart medication anginine. Is there any chance you could convince your Dr to have injections more frequent.? You will find the pain goes.with more b12 We no longer fall & not incontinient .

[biffbrain in reply to Marylyn]

I will definitely ask about it when I see the GP. Thank u for the info 😊

[Bennett1943]

Stay with us, you might at least get info on pain medication !

[Matrix]

Trust me you do belong here if your in pain that is . Try and see another doc in your practise maybe they will have a different view of what's up . In my view not many Drs understand pain and how debilitating it can be , you can't sleep relax or enjoy anything when your in really bad pain x

[Taz97]

Hi ZoeMC

My daughter has hip dysplasia and suffers with severe pain. She also has special needs (pmld) so I understand how you must be feeling. We have been through all the meds you have listed and nothing takes the pain away completely and there are a lot of side effects my daughter suffers from. I would suggest you try alternative therapies and something which helps with my daughters pain is tumeric, a couple of pinches of tumeric with water first thing in the morning will reduce your pain. You will have to play with the amount of tumeric you take which suits you best, but I would start with a few pinches an then increase the nex morning to determine how much you need to help with your pain. Hope it helps all the best and I will pray you find relief.

Taz97

[Ponywoman]

Hi ZoeMC Just turned 70but had the severe hip pain you have...probably for 40 yrs. still road horses but got down to bareback with a sheepskin on the horse I hurt so bad.Had injections, radio frquency. A Kansas University Doc offerred to fix it but she said would take a 12 hr operation but when she said when I stood up all the pins mite fallout! When I was taking 80mg prednisone for Vasculitis, I had no back or hip pain now down to 10mg, I am screaming when I get up on bedside. Use Hydrocodone 5mg, 4daily for many yrs. Now using 5% prescribed Lidocain patches & a sheepskine (synthetic now) on my bed... Really helps! I'm down to skin & bone from Vasculitis, no fat on my hips which is NO help. So a sheepskin & pain patches is all I can offer you except I know how you feel. Take Care, Please

[Marylyn in reply to Ponywoman]

Pennywoman your hip pain ,vasculitis are probably from the same cause.Sadly most Drs don’t recognise chronic nerve pain as a result of a vital vitamin b12 deficiency .The steroids you were given would have depleted even more.Ask your Dr for active vitamin b12 as serum is flawed,folate,iron ,ferritin ,vitamin D blood levels.view videos on b12awareness.org for cases of misdiagnosis.Find yourself a holistic Dr to treat you as I see 16 Drs including 7 specialists to obtain a daiagnosis & Treatment.

[Ponywoman in reply to Marylyn]

Not my problem. I'm very knowledgable about vitamin & supplement use... Been at it since the 1950's. So my B-12, Vit D, blood tests always show these values to be very HIGH. Thanks tho for thinking of me, Ponywoman

[Ponywoman in reply to Marylyn]

Oh, forgot. The pain is MUCH better. Suddenly. Got more meat on my hip bones (my pelvis is put together wrong. Always had trouble sitting hard saddles without a sheepskin cover). Did getting flesh on my hip bones help my pain? Kept experimenting with using & not using my Forteo shots for osteo. Not sure if causing the pain. Using Forteo now as pain is much improved. Ponywoman

[Philip]

HiHi, with the exercise and pushing your self to the point of tears, well I wouldn't attempt to do so much as this could be hurting way too much and maybe gentle stretching, two or three times

[Philip in reply to Philip]

Daily and I'd try not to do a lot of the exercise as that may be your pains going to far, maybe

Until you find out what the problem is. Demand to see a Rheumatologist or such, I'm sure they will sort you out.

[Philip in reply to Philip]

Best of luck and I hope you get the the answers you need.

Philip xx

[Philip in reply to Philip]

Why do you mention fibromyalgia? Has this been mentioned by a gp or other dr? You can pm me if you prefer to.