how to cope when in constant pain

dolphincutieuk

hi im new in here and just want to say im sooooo glad i found this room,im unfortunate in that i have a rather narrow minded doctor and until recently told me i was imagining my pain until i asked for a list of my ailments for a medical form and low and behold arthritis was on my list and was diagnosed in 2007 after a mri scan on my knees and ankles, her response was, its only mild, maybe it was 5 yrs ago but its not now believe me but she wont.ive got swollen fingers, ankles and my knee is constantly swollen apart from other things and the pain is horrendous, also i read a post about spinal stenosis and bulging discs aswell so i googled it and guess what thats me to a tee but that im being treated for by a consultant at a hospital. im glad i found this room so i can talk to others who hopefully understood me. my dr thinks my illness is due to being overweight granted that doesnt help but im in tooo much pain to excercise to lose it, that nasty vicious circle im in.proof in that my back problems started 12 yrs ago and i wasnt overweight then

Numptydumpty

Hi dolphincutieuk,
welcome to the forum.
This is a great place to be. Lots of caring, helpful and supportive people.

Could you change your doctor? You really do need the correct meds, if your doctor doesn't take you seriously, I'm guessing you're not getting them at the moment.

Wishing you well,
Numpty

CJHunter

Firstly Hi, I havent been around for a bit and you are one of the first posts I have read which has made me respond.
I understand completely how it is to be ignored and belittled by your gp. I was 12 when my pain started and was told it was growing pains , even at 25!!!
It took an understanding GP who listened and took action to ge me set on the right direction.
Its not been easy but help is out there.

Consider changing doctors at the practice or change practices. You have a right to choose who you see.
I am now travelling to london from norfolk to see my new consultant.
Its worh it if they are good.

Dont suffer , fight your corner and ge that help, It is ot there. Keep positive, and I hope you find the help you need.

((((((((xx))))))))

p.s I was also told to lose weight , stop smoking and have done both but guess what????

take care xx

dolphincutieuk

hi and thankyou for the replies,the meds im on keep changing but it goes from tramadol and diclofenac to co codamol,naproxen and lansoprazole every 6-12 months usually after i moan im still in pain. i did change my dr to another in the surgery but got told i had to see my old dr has he knew my case so i changed surgeries and this dr's worse than my other ones. i did have fantastic dr's when i lived in london but moved to essex and not found a decent one yet. all they go on at me about is my weight. i asked once in temper why did she give me the painkillers and anti imflammatories and she said because i need them because of the stress my bodies under from all the weight. even though my pain clinic consultant wants me to go on morphine tablets for my pain,which i wont because my 8yr 14yr and 16yr old need me lucid,i cant win and to top it all esa has now stopped my money because i failed my medical. i feel like giving up but i cant because my kids need me.

stickywicket

Hello dolphincutieuk and welcome from me, too. Yes, we all know about the pain of arthritis. I've had RA for 51 yrs and OA for about 35, I guess. I’m sorry about yours. It's no picnic, as my old Mum would have said.

I’d doubt that your doc thinks your arthritis itself is due to your being overweight but certainly much of the pain might be as it does put a lot of strain on joints, especially the big ones like knees.

I understand your view that you’re ‘in too much pain to exercise’ but it doesn’t quite work like that. Exercise strengthens the muscles which surround the joints and strong muscles support the joints. This leads to less pain. I’m afraid daily exercise(s) is/are something that many of us on here find every bit as vital as the meds. Have you seen a physio? Might that be an option?

Did you find the Pain Clinic helpful? I’ve never been to one but people on here speak very highly of them. I can’t really comment on the morphine. I’ve only done it post-op and it makes me throw up but I’m pretty sure there are some Mums on here who use oromorph. It’s hard when you have young children to look after. I well remember those days. Hopefully, your older ones can help out a bit now.

earthspirit

one thing i am noticing from all these forums is the amount of people who wait years and years or in my case decades and decades for a DX

i have been clearly told by one the country's leading research rheumatologists that the dmards do not often work very well when disease is not treated near the start of a major episode.

this would possibly account for why so many people are still suffering despite treatment because it was never going to work as arthur is in too deep in our bodies.

my own docotrs who have only been my doctors for a few years, have taken my medical history apart back to childhood, seeing quite clearly RA staring them in the face. now in some ways i feel gratitude that i did not know i had the disease as i dont like the potential side effects and long term damage that can be caused by the drugs, but i am left feeling "what if" quite often. you cant go back in time so you dont know what pain and illness you might have escaped if you had more radical treatment during these untreated years.

RA is awful and incurable but OA which is often the result of untreated RA is terrible pain and damage that could be the result of failure to treat these undx conditions or failure to properly investigate apparently minor symptoms.

personally i have treated my body well over the years and dealt with flare ups and pain really well BUT i smoke and that however much i try to deny it, could be a possible trigger for the now serious nature of my disease. for some others of you excercise might have been something you increased or changing your diet drinking or lifestyle habits, but if nobody tells you anything is wrong then you arent treating yourself properly for the diseases to remain dormant.

obviously medical science had not evolved to its current position and its not all down to failure to diagnose, but we have a disease that hopefully for future generations will receive far better treatment at an earlier stage.

all these people in pain just aint right is it folks??

Heather65

Hi Dolphin,and welcome,
it doesnt surprise me one bit as it seems that no one talks to each other and they dont like to give out imformation ,now you know you can hopefully get the treatment you need ,
Heather65

elnafinn

Hi Dolphin

Welcome to the forum. I am sorry to hear that you are hitting a brick wall with your gp.

Why not stand firm and say to your gp ok help me to lose weight then. You can be referred to a physio. You can attend a gym via the gp for a number of weeks and have access to a pool. There is help out there but your gp is not working as a team with you. The gp is using your weight as an excuse to ply you with meds and get you out of the surgery asap. Patients who do not have a weight problem are told to go away, exercise, take the meds and come back when they are about 70 years old when they may be offered an operation. I am afraid you have to keep on and on at them. Perhaps if you could try to lose a little weight that argument would no longer stand.

If the last lot of xrays and the mri was done 5 years ago they need to be done again surely :?:

It is really difficult, I do appreciate that.

Elna x

lizzieuk1

HI Dolphin welcome
am i being thick or am i right in thinking you haven;t been seen by the rheumatology dept?? if thats the case i would be demanding to be referred and have some more xrays/scans on the swollen joints and get a proper diagnosis your Dr saying that your weight is the problem is not giving a proper diagnosis regardless of your weight you should have a formal diagnosis of what is causing the pain- it may be compounded by your weight but isn't being caused by it -that is a poor and incompetent diagnosis, it is being caused by a specific disease so push for them to diagnose you properly- the questions to ask are: What structure is causing my pain and what is the disease process that is damaging it?
then ask what are the available treatments and which specialist should i be referred to to deal with my disease? A GP is not specialist enough to be treating you for severe arthritis , its your right to be treated properly don;t let them fob you off.
If you have RA then it need treating properly antiinflammatories will help with the pain but will not stop the disease damaging your joints. the statement that you needed your old gp because they had your notes is rubbish you can see whoever you wish and they should be up to speed with your notes- if theyre not then they are not doing their job properly again don;t let them fob you off it is your right to choose and if they get funny about changing gps mention you may need to consult the general medical council and ask their opinion on the surgeries approach to its patients rights.
ok so am on my band wagon here!!! hopefully that will help though- Drs are not gods and they can;t dictate to us -take control and make sure they know it!
good luck

Folara

Waves hello to Dolphin.

I can't add much more to what the others have said other than to say I hope you find lots of great info and new friends who understand here. I reckon we are all a great bunch of supportive dudes and dudettes.

Fols x

elnafinn

Hi again,

If you have been diagnosed with Osteo Arthritis (OA) then you do not necessarily get referred to a rheumatologist by the GP. The gp can refer you to a surgeon, pain clinic, physio if you have OA as well as for xrays. As far as I am aware to have an MRI done you do need to be referred to a surgeon or consultant.

If both knees, ankles and hands are being affected you should really have a blood test to see if you may have Rheumatoid Arthritis. This blood test is not full proof but is worth having done. You could ask your gp.

If your gp is not so sure about your diagnosis ie thinks it may be some kind of inflammatory arthritis then you should be sent to a rheumatologist. If a rheumatologist's findings are that you have OA you will be referred back to your GP. This is what usually happens anyway.

Elna x

niecee

Original source Mint and tea tree shower gel! I use it in a Hot bath. I soak for ages, The Mint and Tea tree vapours help relax my joints and i have less pain! I hope it works for someone else cos i feel great after it.
When i dont have time to soak in the bath using it in the shower is great!

dolphincutieuk

thankyou for all your replies, i recently went back to the drs and demanded to get re-xrayed/mri scans done only to be told no im too fat and the budget doesnt allow me to go farther afield to another county that has the bigger machine. she told me to join weight watchers for 6 months even though my pain management consultant requested through letter to her that i have the gastric bypass done asap. when i said im a single parent on esa and cant afford weight watchers for 6 months she then decided i was clinically depressed and put me on anti depressants. saying once they kick in i will realise im fat and will do something about it. needless to say im looking for another dr but no luck soo far

hileena111

Hi Welcome
What a stupid attitude {not being rude} but if you say you are fat you know it and dont need doped with anti deppresants to tell you that!!!!
A lot of people have had problems with GP's and managed to change them so dont give up please.
If you have OA a GP does deal with it mostly unless you are getting surgery but you have a right to ask to be referred to a hospital .....I have OA and at that time I had a dreadful doctor who was happy to write a prescription to get you out the door. I demanded to be referred to the hospital and saw an orthopaedic consultant {not a rheumatologist}......from that I've had various MRI's etc
Will you GP not refer you either to a gym to help you lose weight or to weight watchers....most of them have arrangements with weight watchers.
One other thing
You should always have the lansoprozal if you are taking an anti inflammitory eg diclofenic Its a stomach liner....most of us are on one of these.
Good luck and keep looking
Love
Hileena

niecee

Wow what a useless GP! I'm overweight and yes carrying extra weight impact on joints. My gp has suggested weight loss but not given up on me cos of size! I've asked to see dietician. It has been suggested I have weight loss surgery but there are a lot of assessment and can take up to a year before they agree or not. I had an MRI in an open Machine they do exist! The hospital could have referred you or recommended it. Unfortunately when your overweight everyone including GPs only see that which is sad. Find another GP to make the referrals or put in a complaint at the surgery! The practice Manager will have to address it and if you're not happy take it further. I hope you get a positive outcome from this don't give up! Niecee

dachshund

Hello Dolphincutieuk
welcome to this lovely forumthe people on here are so kind and helpfull.just write in when you want help.
i'm on diclofenic and a tummy protector and morphine patches
take care.
joan xx

dolphincutieuk

thankyou all again. i am on the tummy protectors now but she never put me on them, another dr at the practice i saw when she was away put me on them when i asked for a repeat perscription and he asked why i never had them esp as ive been on these meds since 1998, i have since tried to see just him again but its written on my notes im only allowed to see her, when i asked why i get told its because she knows my case. she did bloods last time i was there and when i went to get my results she asked how much alcohol i drank in a day because i had an high level CRP. i was very concerned as im tee total. im not an alcoholic and have never been one, i havent drank alcohol for at least 10 yrs, so i came home and googled it.
CRP TEST
This test may be ordered on a regular basis to monitor conditions such as rheumatoid arthritis. high levels of CRP suggest a flare-up or that treatment has not been effective.

i was swollen when i had my blood test done but im still trying to understand the alcohol reference, and why she didnt think it was arthritis and thought it was alcohol related. think she needs to go back to medical college.

diamond

Now that she knows your crp is high and that you do not drink surely she should be referring you to a rheumy.It is a disgace the way this gp is treating you,go back and ask for a referral.If she refuses write a letter to the practice manager stating that you are unhappy with treatment from this gp.I hope this situation is resolved fairly quickly as there can be a long wait to see a rheumy.I myself was referred from ortho as urgent and it took 10 weeks to be seen and i was already a patient with rheumy.Best of Luck.