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Date: 31.05.2012
From: Fiona

Subject: Useless Rheumatologist

First of all I want to say to everyone who has an arthritic condition , I take my hat of to you all for soldiering on. I need your help guys.
For the past three years I have had on going lower back and hip pain and my knees too and it has gradually became worse and worse.I can feel ok for a couple of weeks with a dull ache on my sacral region and hips.Then I have an "attack" and I have extreme difficulty walking , sitting , sleeping as the pain wakes me up and I can't move to get comfortable without extreme pain. When out and about and when I have an episode I can barely stand or move my legs and I have to hold onto my partner or anything that will keep me up.My left legs drags and I have lost my footing and fell once.Recently I have been getting sharp pains in the middle of my hands and knuckles.

Attack symptoms-:
Extreme sharp pains , throbbing and warmth in hips , lower back and knees.
Difficulty walking sitting or moving
slight swelling in my right hand and both pinky fingers
unable to sleep as I wake up because of the pain.
General feeling of being unwell and run down
pains in elbows and wrists increase
temperature goes up and I have to go to bed.
lack of appetite and very tired all the time.

I get sore throats a lot too.

Day to day I have a stiff achy back everytime i get up in the morning (pain varies)
burning sensation up my spine.

I went to my first rheumatology appointment i was only in for half an hour no bloods taken Dr said its all muscular and I have to get an mri on my pelvic region. I have to disagree with Dr as the pain I get is excruciating I am on 30/500 cocodamol and naproxen. I also have had itchy inflammed eyes and have had cream for them it comes and goes.

I am at my wits end I felt that everything I said was dismissed and I didnt get to speak much . The doctor got me on a good day where my lower back was just sore. I dont know what is going on. I am only 24.

Thank you for your help everyone xx
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Date: 31.05.2012
From: tara

Subject: Re: Useless Rheumatologist

hi fiona
sorry that your doc was such a pig , i am only resently diognosed myself with rhuematoid arthritis , symptoms you have are very like mine , maybe you should at least go back to your gp and ask him to do some blood work and see where you stand with that
they re some great ppl here that have helped me and i am sure they will give you more advice
sorry i could nt help more
i really hope some one helps you soon and at least listen to what you have to say
hugs from me to you and i hope you feel better soon Tara
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Date: 31.05.2012
From: rhona

Subject: Re: Useless Rheumatologist

Hi Fiona, I am surprised that they didn't do some blood tests on you, that is bad, I agree with Tara in saying that you should go back to your GP and get them to do some tests. You are also entitled to a second opinion. Hope you get things sorted soon. x
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Date: 31.05.2012
From: fiona

Subject: Re: Useless Rheumatologist

Hi tara , thank you so much for your comment.Sadly when I last had blood taken nothing was present. I was told from friends never to give up till I get an answer , I now second guess myself because a doctor says its muscular. I just hope that I will find out what is going on soon.

Take care :)

Fi
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Date: 31.05.2012
From: fiona

Subject: Re: Useless Rheumatologist

hi rhona I was surprised too , I felt like i was an inconvienience to the Dr. I hope to get some answers soon , I am shocked because surely the amount of pain i experience cant just be muscular.x
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Date: 31.05.2012
From: rhona

Subject: Re: Useless Rheumatologist

Hi Fiona, i have R/A and i went to my doctor years ago when i first had symptoms and was told it was fibrositis and given the bums rush out the door, it was when things got worse and i went to another doc and got blood tests which then showed high inflammation markers. Hopefully it won't be r/a but you have to find out as you will feel much better if it is and it is treated. good luck. xx
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Date: 31.05.2012
From: fiona

Subject: Re: Useless Rheumatologist

I stopped taking my anti inflammatorys to see how it affected my pain i started taking them and what a difference so there is definetly inflammation there.
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Date: 31.05.2012
From: Dave S

Subject: Re: Useless Rheumatologist

Hi Fiona
Sorry to hear you are not getting anywhere with your rheumy.
I have a lot of the same symptoms as you and have had numerous blood tests and x-rays with nothing showing upbut a bit of wear and tear .
In the end the GP sent me to the rheumy who gave me a good going over and in the end after asking lots of questions decided i had Psoratic Arthritis.
He diagnosed this by history of family and mine with Psorasis all be it hardly anything, ridges on toe nails, and nothing showing on bloods but all the symptons so it maybe worth asking about it
Dave S
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Date: 31.05.2012
From: Yasmin

Subject: Re: Useless Rheumatologist

Hi Fiona,

Oh, sugar!!!! Just lost a very lengthy post to you through accidently pressing keys...I'm gonna try and write again, hopefully this time I'll finish it before I delete it;)p...Reading through your post is like reading about myself...Fiona I can sympathise with your situation, as I was only 20 when the pains started to make themselves known...they started in the right side of my and down my shoulder, arm and right through to my hand...At that time the doctor diagnosed me saying, 'Oh, its only Arthritis'...the continous dull, heavy, throbbing pain and swelling in my sholder muscles and hand caused me years of sleepless and tearful nights...He just prescribed Movelet gel, a couple of years later Ibroprufen tabs...a couple of years after I had 4 months of heat treatment...nothing helped or took the edge off...I stopped visiting my G.p as I was made to feel it was feel it was nothing...I just had to manage the best I can...

About 6 Years ago, the pain spread within my whole body like an inferno...every joint, every muscle was inflamed, it was torturous to say the least...Specifically the right side of my body was affected...It became so debilitating affecting my mobility, I couldn't put any pressure on my leg or my inner ankle...I decided to seek help through holistic methods and had a few months of elelctric Acupuncure treatment...Instead of helping the pain of the electric needles in my reflex points added to my pain...It became so unbearable I stopped the sessions. A couple of weeks later I noticed that the excruciating pain and stiffness in my ankle has lessened quite abit and I was able to walk without limping...It made no other difference...since than I've tried reflexology, Bowen treatment, Homeopathy. I've had 2 years of torturous physio, my physio was named 'the butcher of Birmingham' by his patients:)...some made no differnce at all, some took the edge off at times...Like yourself my physio said the problem was with my muscles...this weakness and stiffness in my muscles created 3 of my spinal disks near my neck to bulge out placing more pressure on the contrasting muscles around...to cut a long story short Fiona...No-one could help me, going back to see the G.p they wanted to put me on Anti-depressants...one specialist actually said to me all the tests are clear, its all in your mind...sort your mind out!...

In the end it all came down to the fact that I know this is all real for me, regardless fo what the professionals had made their minds up about me...I thought ok, let put this into perspective, somewhere down the line it seems I have alot to do with what my body is going through...so it will have to be me who has to reverse the damage done...

A session with a Reflexologist gave me my first break, he asked if I knew my left leg was a couple of MM's shorter than the right...I said no, I had no idea, i've felt any different...but I did realise that my right shoe always wore out alot earlier than the left...the other thing was that the physio had told me that teh muscles in my right shoulder were very stiff pulling my shoulder forwards, off the couch when lying down flat on my back...

I realised my posture may be the problem...so I looked at myself standing infront of a lengthy mirror and realised that my right shoulder was higher than my left shoulder, the right-side of my hip was also a little higher...Looking through the internet I came across a back support that pulled your shoulders back and strightened your back...I wore that for a couple of hours, twice a day for a few weeks, but I noticed a sudden change in the stiffness in my shoulders...It increaed the pain level a little as it was working to balance out the muscles...my ribs became a little sore for a while but it eased...for my legs, back and groin pain, I realised that it was the imbalance in my left and right side that had created a rollercoaster of symptoms all through my leg...There is a very easy exercise that sorted this out 80% within 2 weeks...This can also help Sciatica sufferers...

But firstly you must look at yourself in the mirror or ask a member of the family to do this for you if you don't have a lengthy mirror. Notice which side is higher, look at your shoulder alignment are they balanced equally, your hips, lie down flat, bring your legs up close to your bum, drape a plane material or shawl over your knees look just over the knees and you will see which side is high again...After you've assessed the high side, that is the side you will need to work on...stand on the lower step, hold onto the rail or the door handle and lower your high leg off the step...Dangle it about, releasing it from teh leg joint...In the beginning you will find this very painful but please perservere...allow the leg to be pulled down slightly feeling the pull, keep this going for about 5 mins if you can and very slowly brign the leg back into position with the other leg...Do this two or three times a day in the beginning. Like the shoulder you will notice a sudden change in the stiffness...within a week the change will be immense...I will suprise you:)!....

Additionally to this Fiona, it is very important to drink lots and lots of water...dehydration over time can cause the muscles and bones to shrink, causing imbalances...simple, deep leg and spinal stretches are very important to keep your muscles and bones supple, yet strong...Hope this helps:)....I hope its not too much for you to read...:)
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Date: 31.05.2012
From: fiona

Subject: Re: Useless Rheumatologist

Hey dave thanks for your message , I think ill just need to keep going back till i get an answer. I hope you are keeping well.

Fiona.
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Date: 31.05.2012
From: fiona

Subject: Re: Useless Rheumatologist

Hi yasmin , what a great insight to your problem and how you solved it just by helping your self. it goes to show that not all medical prefessionals can help you. Messages like this inspire me to keep on asking questions and trying to figure out what is going on. I will try to increase the intake of water and try those excercises if i have an imbalance. Thank you so much for the taking the time to type the long message out and no it wasnt too much for me to read i thouroughly enjoyed reading it and it was a pleasure. I hope you are well .

fiona :)
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Date: 31.05.2012
From: marlene

Subject: Re: Useless Rheumatologist

Hi Fiona, the MRI is the route to go, but I am shocked at your rhumy treating you this way. I have Ostearthritis in most joints also my spine so a fully understand your pain. I have bad hip pain on my right side but luckily for me it is down to my permanent limp.
I have to say even though my rhumy team were sure it was OA from the start family history, they still tested me for RA and PA as I have Psoriosis(spelling) albeit a small amount.
I agree second opinion is required here, ask your GP if there is another hospital you could attend, don't be fobbed off it is your right. Take Care and don't let them get you down keep smiling.
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