re arthritis symptoms: I have suffered from severe hip... - NRAS

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re arthritis symptoms

bandbk profile image
31 Replies

I have suffered from severe hip pain for about 3 yrs. I had x rays then but they came back negative, but had physio. I assumed I had pulled a muscle from gardening, had pain on and off and had to stop knitting as my hands were affected. The tips of my fingers feel numb. since may this year I have had the most excruciating pain in my hips neck and side of rib cage. Saw a locum and he said he thought it sounded like arthritis and checked my hips and legs and said the movement was good. he sent me for more x rays and gave me codeine phosphate .told me to come back if no difference. Results came back saying no abnormalities and receptionist said regular doctor wrote : no further action required; i then asked to see a doctor as I have been in agony all this while , getting no sleep as when I turn over in bed the pain shoots across my hips and when I get up I cannot stand up straight away because of the pain. when walking I often get sharp pains across my lower back and hips which stop me in my tracks. I had a telephone consultation from the doctor who is new and I explained the problems I was having and she asked if I was taking painkillers, I said yes but they were not easing it up. It was only then that she said arthritis doesn,t go away. i asked her if she was telling me I had arthritis and she said it was only mild. I feel angry that there was a note saying no further action required when I should have been given advice. she has given me zapain and it helps a bit, and I am able to get some sleep. can anyone advise me what to do next please as doctor doesn,t seem bothered, many thanks

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bandbk
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31 Replies
brightangel profile image
brightangel

Hi Bandbk,

so sorry you have suffered needlessly for this long.

It seems inexcusable! Not sure how things work In UK but I would certainly be jumping

up and down and asking why you have been subjected to all this agony and life-restrictions due to non-diagnosis. I am surprised they didn't do the RA Bloodtest

as I would have thought that would show up the Rheumatoid factor even if the

x-rays supposedly didn't.

If you are tired of pushing xxxx uphill, which would be understandable, maybe you

can get a health advocate to represent you and make phonecalls and go with you as a support person.

I think they get taken more seriously than we do when we are on our own and

that is what they are there for anyway, to help you and take some of the strain off you.

The last thing you need to be doing is fighting the system and the medical profession

on your own, it's bad enough suffering the ill-health.

Sorry I can't offer you any more than that and some 'warm-fuzzies' going your way!

I am sure the ladies here will be able to give you good advice and support.

Best of Luck.

Smiley-face!

bandbk profile image
bandbk in reply to brightangel

hi there brightangel, t y for your reply. I had a routine health check a few weeks ago and with blood and urine samples being done, just before I got x ray results, all are fine, blood count urine cholesterol and b.p.

brightangel profile image
brightangel in reply to bandbk

Hiya, thanks for reply. I avoid the Rheumatologist here in NZ and as I think I mentioned not familiar with UK but as I suspected, the lovely people on this site have responded well so I am sure you will do better from here on in with such great advice and also because of the moral

support. I found it helpful when I was going through a crisis particularly as we don't seem to have the same support here.

Best of luck, and I feel that things can and will only get better from here! Smiley-face!

helixhelix profile image
helixhelix

It really doesn't sound as if you have been well served by your doctors. And certainly not with any human sympathy - we well know here how painful arthritis of any sort can be. Depending on the damage the pain can be completely out of proportion to what's shown on an x-Ray, so you can have lots of damage that doesn't hurt too much or a tiny bit of damage that hurts like crazy!

I think at the very least you should ask to be referred to a pain management clinic to help you manage this. You could also ask to be referred to a rheumatologist, but they may not agree to that. Perhaps you already know that there are many different types of arthritis, some that do have some treatment and others that don't have much that's effective? It sounds as if your docs are assuming you have early stage osteoarthritis, but maybe you do have spondylitis rather than osteoarthritis so could be worth pushing them to check. We're not doctors here, so can't give medical opinions but it doesn't sound like you have classic rheumatoid arthritis - as this tends to go for the knuckles and feet first, and not tips of fingers or hips. But again they could at least test you.

My other suggestion would be to look at the arthritis care forum, which has more people with osteoarthritis - arthritiscareforum.org.uk/v.... There are lots of suggestions for how to manage osteoarthritis.

bandbk profile image
bandbk

hi there I was wondering about osteoarthritis as this was what my mother suffered from. I mentioned this to doctors I,ve seen previously. is this hereditary ,do you know

bigfattoe11 profile image
bigfattoe11

It should show up on xrays mine did had ostes r.a. havent had bloods yet done...does anyone get vomiting from r.a. as im do alot lately... its not my meds and groggy headaches....hope yhis helps please keep pushing as they are hopeless ive had to fight with mine... just kept say nought wrong got xrays now to prove it ....

bandbk profile image
bandbk in reply to bigfattoe11

thank you for your reply. I will give the tablets a go first and then go back to hopefully see a doctor as my surgery often only give phone consultations. I have been nauseus when taking the zapain tablets but hope this eases off after a while. take care.

bigfattoe11 profile image
bigfattoe11 in reply to bandbk

Oh im on mophine patches and morphine liquid quite a combination.... but im at hosp tues to see consultant took me 5months but had a fall and that got me a emergency app im only 53 feel like 90 today .... i dont like my meds i want off them... so them doc can move fast wen they need too..m..m

Coastwalker profile image
Coastwalker

Check you vitamin D blood level bandbk, I was vitamin D Deficient and it affected my hips, tailbone, lower back and legs, yet doctor said my hips were fine nothing wrong, yet I was in much pain with them.

85% of us are either low or deficient in vitamin D, I was and did not know it.

My Pains all fell away almost over night once I supplemented with a good safe dose of D3.

Just a thought.

vitamindcouncil

bandbk profile image
bandbk in reply to Coastwalker

thank you I will look into it and get advice on vit d

tallgal profile image
tallgal

I had a lot of pain in my buttocks and eventually after xray and then MRI scan of my spine it was found to be caused by a bulging disk and scoliosis pressing on the sciatic nerve. But I had to push to get beyond the arthritis diagnosis. You could ask some questions about this possibility.

bandbk profile image
bandbk in reply to tallgal

thank you I will ask next time I see doc as the locum wanted to send me for a scan but the other doc sent for x rays

flow4 profile image
flow4

It sounds like your doctors are assuming you have mechanical joint pain and/or early osteoarthritis (OA), because your x-rays are normal. OA is very common, usually related to age/wear-and-tear, and is only treated with painkillers, exercise/physiotherapy and sometimes weight loss. However, OA pain usually relates to degeneration/damage that can be seen on x-ray, and since you have normal x-rays but severe pain, I think other things need investigating.

A bulging disk in your spine as tallgirl suggests, or a slipped one, is a possibility that needs ruling out.

They need to try to find out whether your back pain is mechanical or inflammatory - that is, to do with how your bones and muscles work, or to do with inflammation you have around the joints. Mechanical pain usually gets worse after exercise and worse as the day goes on; inflammatory pain usually gets better after exercise and is worst if you don't move, especially at night. Inflammatory back pain suggests you might have some sort of inflammatory arthritis.

You say you have had normal blood tests, but you also need non-standard tests for Rheumatoid Factor and inflammation markers, if you haven't had them. If they're positive, this will show if you have inflammation in your body, but not specifically inflammatory arthritis - and it's possible to have normal tests but still have RA/IA, so the blood tests are not proof, but just important clues...

It's also significant if you have any other signs of inflammation, like swollen fingers or toes or other joints, or IBS, or eye inflammation...

The specific places you are getting pain - lower back, around ribs, neck and fingers - are characteristic of spondyloarthritis-es like ankylosing spondylitis and psoriatic arthritis. It might be worth reading up about those...

As others have said, none of us here are doctors. I would definitely suggest asking for a referral to a rheumatologist, unless you read all these comments and think "ah yes, I definitely think I have mechanical joint pain".

Hope you get sorted. It's horrible having pain and not knowing why, and not being treated adequately.

WadeTate profile image
WadeTate in reply to flow4

Great advice!

bandbk profile image
bandbk

thank you I will read up on these also but if the pain persists like it has done for so long I may have to insist on seeing the doctor face to face as they don't seem to do many consultations, they normally do phone consultations which in my opinion are not good enough,. it means you just have to take their word for it. thank you

flow4 profile image
flow4 in reply to bandbk

Yes. I know doctors are under pressure, but you need a face-to-face consultation for a problem that won't go away, like this. Good luck!

Kathyfitz12 profile image
Kathyfitz12 in reply to bandbk

What do they do if you phone up with a broken leg! Instruct you how to apply a splint. I didn't realise GP's were allowed to actually diagnose by telephone. I can understand a quick phone call for advice.....but to actually diagnose & prescibe over the phone sounds "not on" to me!

Kathy

dbestdeb profile image
dbestdeb

Sciatic nerve pain in my back and leg was my first symptom of RA and every time I get an RA flare it rears its ugly head. My rheumatologist has never suggested an X-ray, but steroid shots always help. I'm in the U.S. and I'm unsure of how treatment options differ where you are. Maybe you could talk to the doctor about further testing for inflammation that could be causing the pain. My RA was treated early and I doubt I'd have damage enough to show on an X-ray.

bandbk profile image
bandbk in reply to dbestdeb

thank you I am hoping to see doctor soon

Kathyfitz12 profile image
Kathyfitz12 in reply to dbestdeb

I think medics have very different treatment ideas in the US than we have here. I often visit a friend in Pennsylvania who is on the same drug as me& she nearly has a heart attack when I have a glass if wine ...which my rheumy says is OK & hers has threatened her with all sorts of horrors if she has even a sip ! Her rheumy also dismisses steroid injections & mine is quite happy to give them.

Worst thing when I visit is " the diet" no red meat, no orange juice & platefuls of pulses" Yuk!

Funny thing is we are both getting along OK....which makes me think doing what you think is OK for you is the way to go!

Kathy

flow4 profile image
flow4 in reply to Kathyfitz12

Ooo, I LOVE a pulse or two! Lentils, mmmmmmm! :D

Kathyfitz12 profile image
Kathyfitz12 in reply to flow4

You can have my share flow4!

On the whole I eat anything, but pulses to me taste like ground sand!

But being a nicely brought up young lady I eat them when they are served up......generously seasoned with Soy sauce , chilli, or even good old HP! Anything to mask the taste!

Kathy

shareasmile profile image
shareasmile

I'm not sure if anyone has mentioned this, but it could possibly be your sacroiliac joints also. I had terrible pain in the hip area that came on strong at night and when I sat for awhile. It was excruciating to get out of bed or stand up straight or put socks on...... An MRI might be helpful to check for that also.

Hanging from the door jam for a few minutes in the morning was helpful.

I hope you get answers soon.

bandbk profile image
bandbk in reply to shareasmile

had to smile about hanging from the door jamb lol, i cant reach it, I,m too short. I guess I,ll have to push for an mri to get right results. many thanks and I wish you well.

Kathyfitz12 profile image
Kathyfitz12

First step ASAP us to ask ...no insist.....on being referred to a rheumatologist .if there is a long waiting list & you can possibly afford it, ask around Or the name of a good sensible rheumatologist in your area & get a referral letter from the GP. Even seeing a rheumy privately is not as quick as it used to be, I think axlot of people with RA have given up on the NHS as in my area a 6 month wait for an initial consultation is not unusual.

After all you have the pain & it's your joints that will deteriorate if you wait. With luck it may not be RA....but if it is speed is if the essence.

I was diagnosed 15 years ago & on the whole I think very early treatment....I saw a rheumy one week after my GP told me I should expect aches & pains at my age - 59- & it was only a bit of RA!

Now successfully on Arava & life is good.

Good Luvk, bandbk....just think of the worst pain you have & that will spur you on to getting a proper diagnosis!

Kathy

Sorry about the typos ...but on this site I can't backspace to correct !!! Technology!

AbbieJ55 profile image
AbbieJ55 in reply to Kathyfitz12

How you coping with Arava I felt so Ill on it . Now in great pain an waiting for knee op .

Vivante profile image
Vivante

A full blood count is needed. Possible gout. Similar symptoms.

Problems with thoracic and cervical vertebra, Painful. I share your pain.

I wish you well.

bandbk profile image
bandbk

thank you for advice, yes the doctors give a diagnosis over the phone consultation, but if they think its necessary they will make you an appointment.

WadeTate profile image
WadeTate

Hi Bandbk,

Have you seen a chiropractor?

If your joints aren't showing signs of wear on the xray you may just be fearing the worst about arthritis.

I would advise you to frame it in your mind that this is not arthritis until you get a full diagnosis.

Simple adjustments to posture and exercise may do the trick? Sounds too simple, but yoga and core strengthening exercises work miracles for back pain.

If you can't afford to do that just search youtube for some tutorials for yoga, tai chi, exercises.

Do you need to get a new bed or chair? Are your daily activities causing this?

Maybe try some pain relief techniques like EFT or get into some guided meditations that help you release any emotional stress. They are amazing and free! :)

eft.mercola.com/

youtube.com/watch?v=ARoih8H...

youtube.com/watch?v=KCSWPeN...

If this is a joint problem the best way to approach it is always with a long term view on your diet and the eventual outcome that "you want to see". Short term interventions like pain killers don't work long term.

Here's the thing.....

You could come back from the docs with any number of different diagnosis but does it really matter what tail you pin on this donkey?

Other than the tailored medications people have to take with different diagnosis, they usually come to the realisation that they can't go on doing the same things that got them into the bad situation.

On reflection they find their body is either deficient of some nutrients, they are living the wrong lifestyle, they have to change the way they move or sit, they need more exercise, they are killing themselves with worry and stress , or that the way they have lived has actually physically damaged their bodies.

Drugs will cover those errors in living for a time, but they don't rebuild structure, nurture or nourish. To truly get better you have to use all the tools at your disposal.

If we remove all the bad stuff from life and put good stuff in it's place, you usually start to see better results pretty quickly. Medicine is a great thing and should be used where needed but our first responsibility is to take care of our bodies.

Taking good care is paramount. if we do that most health problems start to ease.

An organic plant based diet with lots of oily fish and fruits and veg is best. Cakes and breads are notorious for arthritis and have had a role in the disease of everyone I have spoken to on the subject over the last 12 years.

Pain and disease are always an indicator that we need to change something. Ask yourself... Can you get well by doing the same things that got you into this position?

Do you need to take better care of yourself and give yourself more love? x

There are loads of beautiful anti inflammatory foods you could add to your diet if you feel this problem has an inflammatory component.

Not all arthritis has an inflammatory component. This could simply be a structural issue or wear and tear.

Avocados, raw cacao powder smoothies with honey are amazing, healthy and tasty....

Who would ever think you could have healthy anti oxidant chocolate! Yee!

Have you thought about adding supplements to your daily regime.

Vitamin E,

Vitamin D3,

Evening primrose oil

Serrapeptase (reduce inflammation)

Eggshell membrane ( wonderful for rebuilding cartilage)

MSM

Cod liver oil

Glucosamine

Chondroitin

And of course apple cider vinegar.

For the external pain you could try heat packs, glucosamine gel, ibuprofen gel.

There is so much you can do.

Please feel free to shoot me a message if you need any help. I have successfully put my RA in remission naturally over the last 12 years and live to find better ways of helping people with arthritis.

Keep smiling.x

Wade Tate

Here's a simple one...Buy a pair of good, fairly soft, well fitting, sports training shoes. Even if you don't do sports! Just wearing them will make you feel better. Footwear and bad body alignment can cause all kinds of movement problems and pain.

Take care of the simple things.

flow4 profile image
flow4 in reply to WadeTate

I am sure diet, exercise and general wellbeing DO have an effect on our health.... :) But the trouble is, this bl@#dy disease doesn't respect our efforts! For example, I... haven't eaten meat since 1987; eat a good diet with lots of fresh fruit and veg and pulses and nuts and beans (plus the occasional egg or oily fish!); drink lots of water and no soft drinks; more-or-less gave up alcohol 18 months ago; dramatically cut down bread and other flour products about 6 months ago; haven't eaten *any* sugar or sweet things apart from fresh fruit for a month; have exercised vigorously 3-4 times/2-3 hours per week for over 2 years now (except for 6 weeks off after a hip replacement and 2 separate weeks of illness; always wear good shoes with orthotic supports in them; regularly visit a sauna and jacuzzi; sing every week and have various other ways of relaxing... And STILL, this #@&%$!! disease got progressively worse and worse until I was diagnosed 4 weeks ago and started on steroids and conventional meds. There is no justice!

WadeTate profile image
WadeTate in reply to flow4

There is always hope so please keep smiling. :)

Have you ever tried juicing? Thing is with eating food is the teeth aint that good a chopping system when it comes to needing increased levels of nutrition.

I would seriously think about juicing because if you are in chronic pain or are under severe stress you will need 4 times the amount of nutrients a normal person needs.

Go organic if you can.

You don't need four times more food, you need four times more nutrients....There is a difference. Juicing can give you that.

Please listen to this video at 4:00 the information is vital to build a full understanding of how you get well.

youtube.com/watch?v=j2i_W5A...

Forget the chocolate bar bit though and go for highly concentrated nutrient rich juices from green plants and veg.

Lets not forget all of the bodies tissues are a store of nutrients, and degeneration is a simple release of the nutrients needed to keep the organs working.

if you don't feed yourself sufficiently your body will eat itself in a bid to release the supplies it needs to run.

You might need to look into metabolic syndrome too.

You didn't say whether you had done any detox work or if you support your structural needs with supplements.

I would have a look at this short video on that.

youtube.com/watch?v=BR4EJLs...

The bottom line is that this disease is complex and you have to pull it apart like strings . One thing will set one inflammatory pathway off and some other food might start another pathway. Learning what those are and dealing with them is step one.

You can do this with anti inflammatory teas, they are great a. celery seed works wonders for many people and costs pennies. Chaga mushroom is another amazing anti oxidant tea you can make. It contains something called super oxide dismutase which is one of the most powerful ant oxidants known. It really isn't called super for nothing! Think Berries times thousands.

Step two is rebuilding the broken tissue.

There is no use trying to cure inflammation in joints that are rubbing together. You might as well try to blow a petrol fire out.

Your diet can rebuild cartilage with the right diet.

One great method is to use eggshell membrane or eucommia bark tea as a kick start.You will need to support those choices with nutrition though.

What are my top picks?

Serrapeptase

Eggshell memebrane

Chaga

Pine pollen for hormones

Glutamine and/or chia seed gel for leaky gut

Raw egg yolk ( natures vitamin) 100% rda of 15 of your top vitamins and minerals in one raw yolk!Blend them in a raw cacao smoothie with honey.:)

Rheishi mushroom

Keep your diet tight and enjoy your life knowing you will get better!

Attitude is everything, as Seneca said " part of the cure is to wish to be cured"

Hugs and best wishes,

Wade

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