looking for a diagnosis
Posted , 7 users are following.
Hi all I have spent the last 5 years in chronic pain in my feet, knees and legs, my hips have also just started to hurt, The pain gets so bad I want to vomit. Other symtoms I have are extreme tiredness, skin rashes especially when I go out in the sun with bad itching at night , I have scars from this all over my body.
I first went to a dr 5 years ago and was sent to to rhemotologist who did xrays and said I had mild arthritis in my feet and low vitamin d level it was 12, he wanted me to take amytrytolene and basically said go away.
I struggled through the next few years taking prescription painkillers and just trying to cope but after crying at work in pain I went back to the drs, she ordered blood testsand results were no inflammation, low vitamin d again and low folic acid, she just prescribed vitamin d and folic acid and said go away.
Last week I rang for my repeat prescription for the painkillers to be told the dr has said no. Now I don't take 8 a day well not every day but if I need to as I cant walk I will but I usually have 100 tablets every 3 weeks, so I called the dr, she got on the phone and basically said drs are under pressure to not prescribe painkillers and because of that I cant have any, I asked what was I supposed to do about my pain and she said the pain in my feet etc is withdrawal pain, well yes I said no painkillers pain will come back.
I then asked her why wont they help my pain, find out what is wrong with me then I may not need to have painkillers, and she said nothing apart from saying that there was no inflammation when I had my blood test so that is all they can do.
Now interestingly my mum has the same thing pain in all her joints, hers started 15 years ago and they have said the same to her no inflammation in the blood test so tough go away, her father ended up in a wheelchair when she was little but because she was estranged from him and he has since died she does not know why that was.
My question to you good people is I am at my wits end, the drs wont help basically because they say I show no inflammation in the blood, I am in agony and the rhemotologist has not done a thing, where do I go from here? because at the moment I am in despair.
The dr said she would prescribe me painkillers but only 100 a month so that's 3 a day she also said "be mindful I will not prescribe any more in a month"
So I am now in pain most of the day with no hope and at a loss as to what to do and I would really appreciate some help or advice or stories of what people have gone through trying to get a diagnosis.
1 like, 33 replies
cherylnanny jane56403
Posted
Hi Jane
I really hope you get sorted soon. You will undoubtedly be very depressed with it all by now. Try to get some time off work, I know it's hard, but your body needs rest and you could catch up a little during the days. But you must not feel guilty about cutting back on stuff you can't do at the moment. It isn't giving in to the pain, it's building strength of mind to beat this. No 'body' should endure so much pain and suffering. Please have hope, and try not to panic. The crying is such a desperate feeling, I am the same at times. It's appalling that you can't get an appointment sooner. Keep talking to your loved ones and take the help you need.
Sending hope, hope and more hope for a good result. xx
Cheryl
jane56403 cherylnanny
Posted
Thanks cherylnanny, i have t limit what i do as i cant manage, more often than not i come home from work and fall into bed for a few hours just so i muster enough energy to get up eat, drink and go back to bed.
Unfortunately i cant take time off work as that would be letting my students down and i am not that sort of person.
My mum has been great mainly because she knows first hand the pain and the utter depression that it causes as she said i am her 15 years ago, no dr has ever helped her and i also hope to find out what is wrong so i can help her too.
She is not in as much pain as me as she says she thinks hers is burning out, but several years ago she thought she would have to give up work and be pushed around in a wheelchair, she is a stubborn woman though and has fought the pain through crying and ranting, mostly at me.
She is still in pain and has also developed some rather horrible looking dark patches on her arms, its horrible as i see what she has gone through and know what i have to come.
I spoke to my chemist today, he said he was very angry with my dr as they are treating me very badly, he said he tried to talk to them but the dr was rude to him as well, how bad is that.
He said he thinks we have lupus, i just don't know, lupus and RA seem to have similar symptoms, the one thing he did say was the dr MUST do specific tests, not just the routine tests on my blood as he knows that inflammation does not always show on these.
He said he feels angry that i have so far been let down by the NHS as he is one of the people who sees me often and he knows i don't abuse my painkillers as he is from our local community and often sees me when i look far from my best.
I will post up on here as soon as i see the dr, i also made an optician appointment today as kerbed the car, another bad thing is my eyesight has deteriorated in the last few years so much so the optician commented and said they want to see me yearly.
I suppose you all know the list of things wrong is endless, work helps me forget all the worries, not the pain it helps me think about others, i then think about me when i get home and get into the place i spend a lot of time in....my bed
Thankyou for all your support, it helps somewhat to share with others as the family see and hear about this all the time.
Jane x
Nu2this jane56403
Posted
Hi Jane,
I've been put on Methotrexate for the inflammation for RA. Maybe you can suggest it to your drs as they do not want to prescribe painkillers. Hope you get some relieve. Will pray for you. Best of luck.
cherylnanny jane56403
Posted
I totally understand where you're coming from.
You will find the right professional soon I'm sure. Keep up the fight. xx
jane56403
Posted
Thankyou, i really hope this will get sorted.....eventually.
Only 4 days to go until my appointment and it is needed as i now have bad lower back pain caused by urine infection i think, having to get up to go to the toilet on average 3 times a night, if my bladder too full my lower back hurts for hours after i go to the toilet and did have blood in my wee at work but that stopped thank god, could do without this as don't sleep well anyway!
will post up what the dr says.
Thanks to you lovely people i at least know what tests to ask for.xx
cherylnanny jane56403
Posted
Just a thought, when I was really struggling at the pre diagnosis stage, I was put on Amitryptiline to help with sleep. It was my saviour, because getting a good nights sleep helped me cope with the days. If you haven't already tried it, it acts as muscle relaxant, pain killer and anti depressant. I'm taking a really small dose each night at the moment while I am waiting for my new medication to kick in. Might be worth suggesting it when you see the Doctor. Good Luck Jane xx
jane56403
Posted
So here is what happened to me at my appointment today.
Went in to see Dr explained that i am in pain everyday bad enough to make me cry and keep me up at night blah blah blah, he got on his high horse and started to make the appointment all about me wanting pain relief and stating that the pain i was having was withdrawal from the painkillers (funny because i have had the painkillers) he looked at my records and said that my ANA had been tested and was negative and said that i seemed rather angry to which i replied yes i am try living in pain everyday and not getting anywhere when you visit a Dr.
He then asked me to take off my shoes and the first thing he said was are your feet always that colour....to which i replied yes, he then tested for a pulse in my feet and asked if i could feel him touching them, i said i could but only faintly, i also told him that a few weeks ago i had put a boiling hot water bottle on my bare feet and i couldn't feel it burning.
He said i have a huge corn on the ball of my foot, which i do and that also causes pain.
Then his attitude changed ALOT, he said he would refer me to another hospital as i had been let down by the rheumatologist at ours (the rheumatologist there put all my pain down to a virus....yes a virus!
He also commented on the rash i have on both cheeks and said he would test me for lupus as my rash in the sun also pointed to that as a possible cause, funny that because when i mentioned lupus several years ago i was told they had tested me for it, they lied!!!
He said i had to have another x-ray on my feet and also have to go back on high dose vit D as that keeps going down and he booked me in for 2 weeks to see him for the results.
He also spoke about nerve blockers for the pain but agreed that amytryptolene was not the best one, he did give me the names of 2 others but i have forgotten them, i think they began with a G or B? he told me to go away and think about it.
He said that he was going to try and help me but it is back to the beginning again, he said that autoimmune diseases are hard to find sometimes but that he also felt i had been let down and that was a shame.
So i guess i can look a little more on the positive....for the time being anyway, although still sceptical as his whole attitude was so different when he saw my deformed feet......sort of had the feeling that he thought i was just making it all up, of course when i showed him my 2 deformed feet he obviously thought oh dear she does have a problem, yes i do and yes i have been let down.
Do i hold out much hope of a diagnosis, the answer is still no but i am proud that i at least went to a Dr and had the courage to say HELP ME PLEASE.
Having x rays and blood tests in the morning, ridiculous thing to say i want something to be found just so i can move on but expect many of you have felt the same way at some point before your diagnosis.
Jane x
cherylnanny jane56403
Posted
Oh wow Jane. Progress at last !! Well done. The G medication could be Gabapentin which targets nerves that are constantly causing pain. Don't think about it.... Try it. You're not back at the beginning at all, stay hopeful, you've made great strides today. I was almost jubilant when I was told I had RA, because at least it explained my symptoms, and like I've said before , once you know you accept and address. Go girl x
cherylnanny jane56403
Posted
Just reading your post back. I think the doctor would have liked to treat you for a corn, quick prescription for cream. He can think again !! You merger, and I'm proud of you. Keep going. x
margaret22116 jane56403
Posted
Great Jane. Good progress. I also think Gabapentin. I tried it but didn't work for me x
cherylnanny
Posted
jane56403 cherylnanny
Posted
Hi yes that was the name, i am willing to give anything a try so long at the side effects don't outweigh the benefits, which we all know can and does happen, and yes i had to laugh as you are probably right about the corn, this time i am not willing to take the rubbish, i cant really anymore as im emotionally drained, like i said before the horrid Dr who stopped my pain relief did me a huge favour as it prompted the anger at them doing nothing....i now realise that too many people just accept what they are told and suffer, hopefully my diagnosis time will come and then i can accept.
Thankyou for your support, writing about my problem here and reading the replies really helped give me the push i needed to say i do matter and i know my body better than any Dr.
I will post up when i get to another stage, hopefully a forward stage.xxx
jane56403 margaret22116
Posted
Thankyou Margaret, small steps, That is definitely the name and he did say another one too but i just didn't take it all in. I may try it i suppose i have nothing to lose so long as i said it doesn't cause extra issues. I think he wants to see the results of xrays and lupus and bloods before he makes a firm decision.
Thanks for your support, i have told my mum about this forum and told her it has been a great help to me.xx
jane56403
Posted
Hi everyone thought i would post on here as just been back to the Dr for blood and x-ray reports.
Blood tests showed negative for lupus, no inflammation markers and x rays showed moderate change in both my feet since last x ray 4 years ago.
The Dr was great, he talked through things with me and said he really understood that i was feeling frustrated with things, he also admitted that blood tests do not always show things.
He discussed with me that he also thought that i could have MS, this is because my symptoms are leaning him that way, things like problems with my speech (cant always remember simple words) and need to urinate constantly alongside eyesight which has deteriorated over the last year with involuntary eye movements.
He said he didn't know who to refer me to neurologist or rheumatologist or both, i declined the Neurologist for now as after my collapse in July they seemed adamant that i had an epileptic fit and i felt like they would make my life worse so i asked for the referral to a rheumatologist with referral to neuro if rheumatology didn't help.
He agreed, he was really really great and admitted that it is hard sometimes to get a diagnosis as some specialists just focus on one aspect, he admitted that his knowledge was limited but he was determined to get to the bottom of this. He also said that at the end of the day drs had meetings to discuss patients, it looks like i was a topic of one of those discussions, that is why i think MS has come up.
My husband had the day off work today to take me and when i came out of drs i cried, just because i felt so relieved that he was listening to my issues, he said he believed me and that meant so much.
Having looked at symptom's of MS i agree that i show most of the signs but have chosen to go to rheumatologist first because of the pain in my bones, they can also check my nerves, i will discuss this with them when i get an appointment which looks like it will be a few months yet!
He also discussed pain relief and said that he would not be stopping my painkillers at the moment as he said that was the least of my worries, i had kept a diary of my pain and painkiller usage and after looking at it he said that 4 tablets a day were not adequate, i had told him 4 tablets had me in agony where as when i upped it to 6 my working day was more manageable.
I am still at the beginning of a long road but at least i have started on that road, my problems began almost 5 years ago i have struggled but now feel like i could get the help i need.
Interestingly he also put on my referral that i was not to see the consultant i saw before as he agreed that the consultant had not acted in my best interest, as an example he said if the consultant thought i had a nerve issue he should have done nerve tests, he admitted that he was a nice man but could come across a little different to a patient.....that spoke volumes to me.
Anyway after the dr visit i went to bed as exhausted and slept for 5 hours straight, its going to be a long road but i can maybe see that some day i will get a diagnosis.
cherylnanny jane56403
Posted
Hi Jane
I'm so pleased you have finally got yourself understood. I hope that the extra pain medication will help you through the next hopefully, few weeks, rather than months. Take care. x