looking for a diagnosis

Allergies, blood and immune system
1

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 tests and 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.

2

Hi. Change doctors and get a new referral. Your symptoms just make me think of Lupus and it does not always show up in blood tests.

Are you based in the uk? Have you ever had a blood test whicj vhecks ana?

3

Hi Jane,

I agree with Margaret, I would definitely get a second and third opinion if necessary. I have done extensive bloodwork each different depending on the Rheumotologist. My last rheumy asked me to get a second opinion on his own diagnosis just to be certain. I thought that was awesome. I would definitely request an ANA. Also maybe you should see a neurologist they may have some thoughts as to whats going on. Best of luck to you.

4

Hi Jane. I was exactly the same as you for my first 3 years before RA diagnosis. The RA didn't' present itself in blood tests, but I demanded more regular tests as the pain got worse. Also, I suffered itching with excessive pain medication at the time. Keep insisting that you need a referral to a specialist in every area as there is obviously a family history there too. Your life will be transformed when you get on the right active medication. I'm struggling a little at the moment, but have been pain free for years. My Rheumatology nurses are angels. Keep fighting and good luck. xx

5

Thank you for your reply, I am going to call the drs today as since I have gone down to 3 painkillers a day I have barley been able to walk, I have been a mess at work because when all you feel is pain that obviously takes over.

 I have also noticed that my hip and other joints that were not clicking before have began to click, almost like they are dislocating, this isn't terribly painful but uncomfortable, and other joints such as my thumbs etc that didn't really hurt before are now showing pain, maybe they did before but the painkillers controlled them.

The bottom line is my feet and legs in particular, the pain gets so bad its like my legs and feet are on fire, being off my feet makes no difference so sleeping well has not been something I have done well for the last 5 years.

My mum has been treated the same as me, they do 1 blood test that shows low vitamin d etc and they then refuse to test for anything else.

I came on here in desperation when the dr said no more painkillers, i don't like taking them but i would rather have a little bit of quality life, even the painkillers don't help totally but they ease the pain enough for me to be able to move.

I am a lecturer so i have to be on my feet all day and the last few weeks i have struggled as we are so busy.

i would rather they found out what was wrong and could go on a medication that stopped the pain or flares or whatever i have, then i wont have to fight anymore as everyday is a fight as it is.

Although i don't like hearing that other people on here have suffered like me it is comforting to read that others had the same struggles and then there was a light at the end of the tunnel. xx

 

6

Hi yes i am in the UK, i have looked at lupus as well but that was dismissed with no tests at all, so i am torn between lupus and RA or both?

My Dr seems to think that if no inflammation shows in a blood test then i don't have anything, ridiculous i know as i have read that these things do not always show up.

In fact i read on this forum i think that someone had gone for their blood test whilst in agony, no inflammation showed in their blood, several months later when they were having little or no pain the inflammation showed up in their blood.

I am going back to the Dr and will talk to them about this as just because there is no inflammation marker doesn't mean something is not happening. xx

 

7

Thanks i will look into this.

I have seen a neurologist a few months ago as i had a collapse at home and had to be taken to hospital, i told her about my symptoms but she dismissed them saying my pain was due to low vitamin D, she tried to say i had an epileptic fit, an MRI has showed nothing of the sorts.

Her advice just take a vitamin D tablet every day.........yes i already do that to try and manage unless my blood shows a low vitamin D and then the Dr will prescribe high doses for a few months.

Other advice i have been given - stay out of the sun.......i have to as my skin erupts in severe hives, one dr said i have solar urticaria and i have to take steroids when it gets bad, the steroids help.

This particular Dr i think has made her mind up and apart from being very unprofessional she is also being uncaring.

The last thing in the world i want is to have something i cant ever get better from but at the moment all i want is a diagnosis so i know i am not going crazy, well not too crazy ;-)

We know our bodies well and as such we should be listened too. x

 

8

Absolutely right Jane. I have Behcet's very similar to Lupus. My bloods are often clear. Last appointment nothing to see. But my specialist said he eould not be driven by blood tests but even some of them insist on inflammatory markers being raised! It is absolutely infuriating. I travel to Cambridge for treatment because there is a very goid vasculitis unit there.

If I were you I would phone Vasculitis UK who have a good helpline service and supply information packs for gp's.

You really can insist on a specialist opinion with joint pain like that. Worst case scenario, pay for one private appointment with a good specialist and get follow up on NHS. Good luck.

9

Hi Jane,

I am sorry that you are going through this. Sometimes i feel prayer and meditation is the best medicine. You can overcome anything with Jesus. I hope you get the diagnosis you need. Another thing that I been looking into is changing my diet. I been using a lot of ginger, tumeric and oregano in my meals/teas. They have alot of medicinal benefits. Look into foods that work for you and read their benefits online.

10

Hi Jane. You sound more determined to get to the bottom of this. A copy of your post should make any health professional take you more seriously. Keep us posted on what is sure to be positive progress. Keep pushing, there is light at the end of the tunnel. x

11

Ask to see a rheumatologist. I have very similar symptoms was diagnosed with fibromyalgia.

Good Luck on your journey.

Hugs ,

Hope 😊

12

Thanks everyone for your help, i have made a Dr appointment with the intention of telling them i cannot go on like this, only problem have to wait until 30th November for it, made the appointment a week ago!

Sitting here with my feet on fire and shooting pains so bad i have been crying.

I have taken the 3 painkillers a day as the Dr ordered and the result is i don't sleep properly because of the pain. My husband says he hears me moaning in my sleep, i have not had a whole nights sleep since i cut them down due to severe pain, the pain is exhausting, the last week i look awful as i am trying to manage, disturbed sleep, work and home.

I plan on telling the Dr i need a referral to not only a rheumatologist but also to a pain clinic.

I still cannot believe a dr would rather see me in severe pain than find out what is wrong, but i just know i will end up sitting there crying as i expect for the Dr to say the same thing they always say, "the blood tests showed no inflammation"

Another funny thing this week is that alongside the burning internal pain in my feet i have noticed a lot of tingling, my feet are cold all the time and have had reduced feeling so bad i could put a hot water bottle filled from the kettle on them and they didn't even hurt, but yet inside they are shooting with pain and feel like they are burning.

I know there is something wrong and i live in the hope it is found so i can possibly have some sort of quality in my life rather than this constant pain, it is a curse and at the moment i feel like i am fighting a losing battle.

I will post up what happens on the 30th at the Dr and hope for some good news soon.

 

13

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

14

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

 

15

So Jane I had the very same problem with my feet. Happy to tell you that hydroxychloroquine took that feeling away completely. Diagnosis opens up the possibility of good treatment with the right specialist. You are doing everything you should do to make that happen so have some hope it can change for you. 

16

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.

17

Hi Margaret

How long did it take for Hydro such loris gone to start working for you?

18

Hideous spell check..... You know what I mean😁

19

I totally understand where you're coming from.

You will find the right professional soon I'm sure. Keep up the fight. xx

20

Hi there ...almost immediately believe it or not. I went from extreme pain and being virtually unable to walk my feet were in such pain. Was living in one pair of boat like open shoes. Within about 2 weeks was wearing normal shoes again.