Please can someone help me or give me advice I am desperate.

[shezaroo123]

I have had joint pain and muscle weakness/shaking that started 12 years ago it first started in one knee then the other then one shoulder then the other it stayed that way for quite a few years it would come and go. Then I got really bad 3 and a half years ago and have been pretty much incapacitated due to fatigue and pain. Was told I had chronic fatigue syndrome and fibromyalgia steroids had been mentioned to me in the past so I went and saw the gp who dealt with these and he said he couldn't inject that many joints in one go and gave me a course of steroids well within a week I had no pain anywhere I went back to him and he said this proved it wasn't fibromyalgia and he believed I had sero negative rheumatoid arthritis due to bloods always coming back normal. He sent me to rheumatologist who said that wasn't enough to diagnose an inflammatory problem as steroids treat many illnesses and he wanted me to stop them. 2 weeks later had a bone scan this showed severe inflammation in both sides of lower back and mild in wrists. When I went back to see rheumatologist it was a different one and he told me he had more inflammation in his body than I did and steroids stopped pain because they lift your mood!!! And he didn't even look at bone scan and I was too distraught to even question him about it. I phoned up 2 private musculoskeletal clinics who treat fibromyalgia and both of them said it definitely sounds like an inflammatory problem and I need to be under a rheumatologist and one gave me the name of 2 hospitals so I picked one and saw him and he told me he doesn't think they will ever get to the bottom of what's wrong with me and that if he took steroids he would feel better and I tried explaining that yes they took all pain away but I was still virtually bed ridden anyway he ordered an mri of my back and just found out today it showed NO inflammation and he wont see me again. So I am at a complete loss as what to do no one is helping me and all I want is to have my life back feel like I would be better of dead then having to live this torturous life day in day out without knowing what is wrong with me I cant cope anymore. Please anybody your input would be very much appreciated as all my doctor keeps saying is its down to specialists.

[earthwitch]

Sounds very similar to what I was going through about 8 years ago. I now have a diagnosis of ankylosing spondylitis, but its taken 5 separate referrals to four different rheumatologists to finally get taken seriously. It can be incredibly difficult for women to get diagnosed with AS as there is still a myth that it is a male disease (even though at least one in three people with it are women), and often women don't show as much evidence on xray or MRI as men do, as well as it just being a very difficult disease to diagnose anyway with no hard and fast tests to conclusively prove it. If you had a back MRI then it sounds like they were looking for sacroiliitis which would go some way to proving AS, but even that test isn't always positive straight off. The only thing I could suggest is ask your GP if there is a spondyloarthritis or ankylosing spondylitis specialist you could see; ask if your GP thinks it would be worth doing a sacroiliac xray (rather than relying on the MRI - my MRI was negative, but my xray was positive), and ask your GP whether you can try antiinflammatory medications like NSAIDs to see if that helps, seeing as the steroids did. NSAIDs are the first line treatment for AS anyway, so a good response to them would help point towards an inflammatory spondyloarthritis. Having multiple joints involved is also very common and if the joint inflammation is enthesitis (inflammaton where tendon joins bone) rather than synovitis (inflammation right inside the joint surfaces) then thats also a hallmark of AS.

If you think AS might be possible, check out the information on the NASS.co.uk website, especially the checklist for inflammatory back pain.

And it really annoys me when I hear doctors saying that anyone would feel good on steroids - they might do, but if specific pain disappears when you take them and reappears when you stop, then there is really no other reason for the pain than inflammation.

[shezaroo123]

Hi earthwitch,

Thanks for getting back to me. Well I had the bone scan that showed severe sacroiliitis in both sides of lower back but the mri was normal. Because this joint pain started 12 years ago I had been on the NSAIDS for years which may have helped in the beginning but they do nothing now and even things like co codamol and tramadol don't really help the only thing that has ever got rid of the pain was the steroids. This pain is very specific and its always on movement so for example when I bend my knees or move my arms and the same when I get it in fingers and big toes its always excruciating pain when I bend/move them and like if I try to walk down the stairs then the thigh muscles constantly shake and its same with arms holding a kettle makes the tops of them shake and feels like ive got a ten tonne weight in my hand. With regards my back it hurts to sit down and like bending over is very painful and my neck is very painful too. I am going to ask to be referred to Queen Elizabeth Hospital as was given 2 names of rheumatologists their who are supposed to be very good. I just wish they would listen to the facts and evidence so full of despair right now.

[Hidden]

Your situation does sound very hard to cope with and I from what you are saying you have a lot in common with Earthwitch so it would probably be good idea to check out spondyloarthritis as she suggests. I did read a list of all the symptoms of Fibro yesterday (a huge list pasted below) and I related to many of them myself although I've been told that mine is definitely RA by my rheumy and other medical practitioners recently. I know people with Fibromyalgia are often in huge amounts of pain (which is why I don't think I have it) so if this diagnosis is repeatedly given and you are showing no damage at all to any of your joints then it might be worth finding a rheumatologist who specialises in this related condition? - or if you are sure it isn't Fibro then keep pushing on for answers. I hope you get help soon whatever is causing your problems. Steroids certainly don't make me feel better in a general way - I'm struggling horribly on them just now! Tilda x

There are 63 symptoms of Fibromylagia - with more being recognised all the time.

PHYSIOLOGICAL PROBLEMS:

__ recurrent flu-like illness

__ recurrent sore throats, red and injected

__ painful lymph nodes under the arms and neck

__ muscle and joint aches with tender and trigger points - up to 18 of them

__ night sweats and fever

__ severe nasal and other allergies

__ irritable bowel syndrome (IBS)

__ weight change - usually gain

__ heart palpitations

__ mitral valve prolapse

__ severe PMS

__ yeast infections

__ rashes and itching

__ uncomfortable or frequent urination

__ interstitial bladder cystitis

__ chest pains (non-cardiac)

__ temporomandibular joint dysfunction (in the jaw)

__ hair loss

__ carpal tunnel syndrome

__ cold hands and feet

__ dry eyes and mouth

__ severe and debilitating fatigue

__ widespread pain

__ other chronic illness(es) usually present (like diabetes, hypoglycemia, asthma, lupus, ms, etc.)

__ numbness in the limbs, not painful like pins & needles

__ painful swelling in the hands, legs, feet, neck

__ GERDs (gastro-esophageal reflux disorder)

__ “growing pains” start in childhood and teens, continue into adulthood

__ widespread body pain during/after physical exertion

COGNITIVE FUNCTION PROBLEMS:

__ attention deficit disorder

__ spatial disorientation

__ calculation difficulties

__ memory disturbance

__ communication difficulties (problems speaking, confusing words)

PSYCHOLOGICAL PROBLEMS:

__ depression

__ anxiety and panic attacks

__ personality changes, usually for the worse

__ emotional lability (mood swings)

OTHER NERVOUS SYSTEM PROBLEMS:

__ sleep disturbances

__ headaches

__ changes in visual acuity

__ numb or tingling feelings

__ burning sensations

__ light headedness

__ feeling 'spaced out'

__ desequilibrium

__ frequent unusual nightmares and disturbing dreams

__ tinnitus (ringing in the ears)

__ difficulty in moving your tongue to speak

__ severe muscle weakness

__ susceptibility to muscle, tendon, ligament injury

__ intolerance to bright lights

__ intolerance to alcohol

__ intolerance to sound

__ extreme sensitivity to medications and their side-effects

__ alteration of taste, smell, and hearing

__ insomnia

__ inability to achieve stage 4 restorative sleep

__ morning stiffness in the muscles and joints

__ restless leg syndrome

__ muscle spasms

__ muscle quakiness and shivering during/after activity or exercise

__ sleep paralysis (related to stage 4 sleep deprivation

[Victoria-NRAS Partner Moderator NRAS in reply to Hidden]

Hi Tilda

It looks like this may have been copied from a website. If so, would it be possible for you to give a link to where the list has come from?

Many thanks

Victoria

(NRAS Helpline)

[Hidden in reply to Hidden]

It was on a thread on the Arthritis Care forum Victoria. I copied and pasted it onto my notes and don't know where the person with Fibro got it from I'm afraid. Probably from a Fibro site. Sorry if I shouldn't have lifted it in this way. I was just trying to make the point that Fibro shouldn't be dismissed as symptom-less really? TildaT

[Victoria-NRAS Partner Moderator NRAS in reply to Hidden]

Hi Tilda

No, not a problem, just useful sometimes to see where things come from.

Many thanks

Victoria

[shezaroo123]

Thank you TildaT No generally they didn't make me feel any better I was still unable to do anything still but the only thing it did do was take all the joint pain away. In a way I wish he never gave me them because finally I know there is something out their that actually takes my pain away but I can't get given it anymore. To be honest I haven't a clue what it is but from what I have read about fibromyalgia my pain is not consistent with that I only get the pain when I move a particular joint and its only while I do that movement so for example bending big toes, bending knees moving shoulders/ arms and when I don't do that bending or moving motion then it doesn't hurt and 3 doctors have told me that in their opinion its an inflammatory problem but then 3 rheumatologists just say fibromyalgia!!! And again the pain in the affected place will last for months and then disappear for months and repeat like that which again is not consistent with fibromyalgia. Even my doctor doesn't think its that but says there is nothing she can do it is up to them meanwhile I am at rock bottom and trying to stay positive thinking that surely someone will get to the bottom of it and then get given a bit of hope and then hit a brick wall again! x

[shezaroo123]

I didn't see the list till I posted my answer I have just gone through it and I have about 10 of them but I know a few of them are down to other conditions that I have. The last rheumatologist checked my pressure/trigger points and apparently I have 0 which to be diagnosed with it you have to have at least 15 this is when he turned round and said to me I don't think we will ever find out what is wrong with you!!!

[Hidden]

Well then it sounds as if you know this is something else and all you can do is follow your instincts.

I don't show much visible swelling with my RA but my consultant told me that rheumies can usually find inflammation even when its good at hiding - this is their job. But as Allanah pointed out recently there are over 200 types of arthritis and also neurological conditions that can cause pain so I guess you will have to keep on searching for yours?

Good luck and I hope you can somehow keep your head above the parapet. Attending CBT talking therapy or pain clinic might really help you manage things better in the meantime. I wish I could get some of this - I've been referred but am still waiting. Tilda x

[shezaroo123]

Thanks again TildaT, I just don't know who to turn too thinking of even paying for an mri on my knees in the hope that it will show what the problem is as it completely incapacitates me when its really bad to the point of needing to be lifted on and off the toilet because I can't bend my knees so have to try and keep my legs straight which is impossible when going to the toilet! I did refer myself for counselling which I am now having but can't say its really helping as it doesn't make the situation any better. Speaking to the doctor today and going to give one last rheumatologist a go who I got given the name of so really hoping she gets to the bottom of what is wrong with me. It's the waiting that is the worst isn't it, I hope you don't have to wait too much longer. x

[alibromo]

Hi Shezaroo . Sorry you are feeling so poorly & not getting any answers. Reading your blog as made me feel really . Please go onto the NRAS website & follow the help link i am sure they will help you. Please keep strong i am sure it will get sorted like many people on here i suffered years before i got diagnosed. Big hug from me to you. Xx Alison

[shezaroo123]

Hi Alison thanks for your reply :). It is just so hard to keep trying I am at the point where I'm thinking I must be crackers and imagining all this debilitating pain and fatigue! But that doctor that gave me steroids did say that it proved it wasn't fibromyalgia or in my head but an inflammatory problem but no one seems to be listening to that. What is it that you have been diagnosed with? Thanks for the hug and sending one back. X

[alibromo in reply to shezaroo123]

I was diagnosed with RA 4 years ago but was under the hospital with simular problems like you for about 5 years before that. I have also been told i may have fibromyalgia. Have you had tests for other things like high b/p, diabeties & kidneys. You never know, our bodies are funny things xx Alison

[Victoria-NRAS Partner Moderator NRAS]

Hi Shezaroo

I really feel for you, as this is a horrible situation to be in, being no closer to a diagnosis. The fact that you've been told they may never get to the bottom of what the problem is shows that this is not a typical case. Wih this in mind, would it maybe be worth seeing another rheumatologist for their opinion? Also, I speak to a number of people who don't have a very firm diagnosis, but sometimes even if they can get to a point where they have theories on possible diagnoses they might be able to start some treatment, and sometimes it is in treating a condition that a borderline diagnosis becomes clearer.

If you'd like to talk this through at any stage you are welcome to call our helpline. We are available Mon-Fri, 9.30-4.30 on 0800 298 7650.

Kind regards

Victoria

(NRAS Helpline)

[shezaroo123]

Hi Alison it's good to hear I am not the only one that is having these kind of problems in terms of diagnoses as far as I know that side of things are ok but I do have an auto immune thyroid condition and auto immune bowel condition and had low vitamin d and iron. X

[shezaroo123]

Thank you Victoria I shall give that number a call and see what they say to me.

[Hidden]

Hello shezaroo

I do feel for u. You are in pain without any diagnosis no wonder u are feeling down. I first started having wierd symptons on off very sharp pain about 12 years ago and I was diagbosed with many things ibcluding post natal depression exhaustiion

[Hidden]

Sorry shezaroo I pisted before finishing anyway got diagnosed 2 years ago with ra. I honestky di think I had it all that tme. you are right that being in this pre diagnisis stage is awful as u xcan feel so stuck.eally hope this new rheummy comes up with some answers. R

[shezaroo123]

Thank you for replying mads and it really does give me some hope hearing similar stories like yours. It really is like living in a nightmare and some of the way that the specialists have treated me have been absolutely disgusting which makes the situation feel even more hopeless. Although I don't want to get my hopes up but got in touch with this place who you can go to when you feel you are not receiving the right care/diagnosis from NHS or even private and they have advised me to see a good haematologist as they can look for clues in the blood that might point to what is wrong with me so will be speaking to my doctor on Monday. But so glad I now have someone on my side.