Possible RA. Hoping for advice and support.

Saltdog

Hi folks,

My name is Kevin, I'm 38, reasonably fit (until recently) and am worried that I may have some type of Rheumatoid Arthritis.

I'll try to explain why I think I may have RA. It may take a while though so I hope you're sitting comfortably!

Just over a year ago, I started getting pain and stiffness in my right shoulder. I thought nothing of it and suspected that I'd just slept wrongly on it. The pain never went away though. In fact, it started getting worse. Not only that, the left one also started getting sore. I visited my GP and was told that I had a suspected frozen shoulder. He then proceeded to give me a steroid injection in to the right shoulder. It had absolutely no effect. So, I went down a different route. I'm lucky enough that my work allows me access to private medical care. They have a specialist Musculo-skeletal team who are on the end of the phone whenever needed. I gave them a call and they referred me to a local physiotherapist. After some sessions with my physio, she recommended that I try to see a specialist.

In the mean time, my foot also began to get sore (I felt very hard done by at this point but didn't necessarily connect the problems). My GP and a chiropodist diagnosed me with Planter fasciitis. I started getting treatment for said condition, again with little or no improvement.

I saw the shoulder specialist who gave me an MRI on both of my shoulders but initially told me he couldn't see anything amiss so he'd refer me to a neurologist in order to get some nerve conduction tests done.

I got the nerve conduction tests (very odd experience) and found out my nerves were all fine.

I went back to the shoulder specialist who told me the radiographer, on analysing my MRIs had seen a small tear in my right rotator cuff. I was booked in for surgery a couple of days later. The operation successfully repaired a full width rotator cuff repair. For good measure, the surgeon also gave me a steroid injection in my left shoulder which seemed to make a big difference when I woke up.

Fast forward a couple of months of recovery and physio, I managed to see a specialist about the problem in my foot. He told me I definitely did not have plantar fasciitis in my right foot and thought I might have some type of arthritis instead. This was an NHS appointment and I was referred locally to a visiting rheumatologist.

I then had to go back to the shoulder surgeon so he could perform a capsular release on my left shoulder. This seemed to free things up lovely at first. Also, my right shoulder was beginning to feel normal again after the rotator cuff tear repair. However, the surgeon asked why I was taking strong anti inflammatory tablets. I mentioned the fact that the NHS foot specialist had thought I may have arthritis in my foot. He told me I should tell the rheumatologist about my shoulders as well since he believed there could be a connection.

I got the rheumatologist appointment, he didn't think the foot and shoulders were connected at all and referred me for an MRI on my foot.

My shoulders have since started to get sore again and I've had the MRI on my foot. My shoulder surgeon told me he completely disagrees with the rheumatologist regarding my shoulders and foot being connected so has referred me to a private rheumatologist?!?!?

Anyway, I have a follow up appointment with both the NHS rheumatologist and initial consultation with the private one coming up in the next couple of weeks!

The pain seems worse in the morning and in the evening. I've been trying to exercise but sometimes find it too sore. It's all getting me down as I keep reading that it's important to start getting treatment early on. For me, I've been trying to get something done for about 14 months and it's wearing on me a lot.

Sorry for the long-winded post but I'm glad I have found somewhere where I can hopefully find some support from people who may be in a similar situation.

Kevin

moderator

Hello Kevin

Welcome to the Forum. I am sure you will find support, advice and light relief here.

I am one of the moderation team, we all have one or more arthritis conditions or look after family with the same. If you need any help with the technicalities of the forum just get in touch via a personal message.

I hope you find the forum useful to you

CK Moderator.

stickywicket

Hello Kevin and welcome from me, too. I've read your other post on LWA but I'll stick with this one for now.

You're right that, if you have one of the 300 or so auto-immune forms of arthritis, your best bet is to get started on Disease Modifying Anti-Rheumatic Drugs (DMARDS) as soon as possible. Sometimes that's straightforward – a positive blood test, a referral to a rheumatologist and then the procession of meds, blood tests, appointments etc. Sometimes it's not so straightforward. Some forms of auto-immune arthritis give a negative reading for the rheumatoid factor. Then it can be a matter of is it or isn't it?

The rotator cuff problem seems to have clouded the issue a bit. Clearly there was a tear but many people get these with or without any form of arthritis. Then there was the 'plantar fasciitis' – or not, as the case may be. Again, it may or may not be arthritis and, if it is arthritis, it may or may not be an auto-immune form.

Here are some things to think about. Is there any family history of auto-immune diseases? Do you have any fatigue? Do the joints feel hot to the touch?

As for exercise – yes, it's essential but (a big but) probably not quite as you exercised previously. Be aware. Stop when you feel you have a bit more in you. Exercise that doesn't stress the joints is better. Have a look here http://www.arthritiscare.org.uk/LivingwithArthritis/Self-management/exercise-and-arthritis

And the children? The watchword, for many aspects of life with arthritis is 'adapt'. I started with my RA aged 15. It was very bad when my boys were young and DMARDS hadn't yet made it to mainstream but I could still play with them (cricket and footie in the garden featured heavily) albeit differently at times. I can now play with my grandsons but differently. They are both kind, thoughtful little boys who automatically adapt games to make them easier for me.

I hope you get a quick diagnosis (bearing in mind it might not be an auto-immune arthritis). Keep exercising (thoughtfully) and, above all, keep having fun. It's essential.

Saltdog

Thank you so much for your reply Stickywicket. I'm just going to send a quick reply as I've just been to the gym and need a shower before starting my shift at noon.

I didn't say it in my previous post but I already know that I don't have the markers in my blood. The rheumatologist I saw already did say that it may be sero negative (if it's arthritis at all!).

Like you, I'm confused by the cuff tear as was my surgeon. When I first started getting the pain in my shoulder I still had full mobility so there were no signs of a tear then. One theory is that I managed to tear it while it was impinged through inflammation. That's the reason I had the capsular release on the left shoulder. The surgeon felt it may end up the same way if not treated (that and, as a private surgeon, he was probably hoping to make some cash for his holidays!)

I reside what you're saying about maybe not managing to exercise to the same level as before. Right now, I'm taking it fairly easy and trying not to push through the pain too much. I feel I need to push a little bit though. Otherwise I'd be sat on my backside all day feeling sorry for myself and I don't want to be that person.

Anyway, better go in the shower or I won't have time to eat before work. Thank you again. I think I've come to the right place.

Kev

theresak

Hello Kev and welcome. I, too, saw your other post. Your symptoms rang a bell with me, as initially my GP thought my shoulder problems may be due to frozen shoulder. When my fingers joined in, he sent me to a rheumatologist, and to cut a long story short, I was diagnosed with RA, of which I had zero knowledge. I know a lot more now!

I was very 'down' at first - unable to pick up our first baby grandson, which was frustrating. I tried and failed on various drugs/combination of drugs for the first 18 months. Eventually I was given a drug that worked and life began to improve.

You may not be able to exercise with the same intensity - you need to strike a balance between keeping yourself mobile while not taxing your joints. 'Little and often' might suit your joints better. If you do have a type of auto-immune arthritis there are drugs to help you. Along the way you will find ways and means to adapt.

I still manage to play with my grandsons, though some activities are out. I'm always the wicket-keeper in cricket games, as they figure I won't need to run - not strictly true but we're not at Lord's! I can shoot in our basketball competitions, and I play table-football too. It's surprising what you can manage.

Please keep posting and let us know how you are.

Tezz

Saltdog

Thank you for the reply Tezz,

It's interesting to hear that someone else has had problems with their shoulders. I was beginning to doubt myself while reading through various threads since the shoulders didn't seem a common area to get anything. I've only had a slight twinge in one of my hands but that could have been anything. Also, my jaw was sore for a few days. Again, could have been anything. My main issues are with my shoulders and my right foot.

I haven't been exercising at any sort of high intensity. I agree that little and often may be the way. My worst time of day seems to be last thing in the evening and I wonder if it's because I've relaxed a bit too much and become stiff/sore. Morning isn't even as bad. In between though, it seems fairly bearable along with the drugs I'm already taken (although they don't seem to help when taken in the evening). I've put on an awful lot of weight over the last year from lack of activity and unhealthy eating so I am trying to turn that around. I love food though so I like to exercise more to allow me the odd treat. By not exercising, I need to be much more careful with what I eat and I'm not particularly good at that! :oops:

I'm walking with my dog every day when home albeit a lot slower than I used to. I haven't been able to kick about a football with my son due to my sore foot which annoys me. I've managed to get out on my new mountain bike once since I bought it in November!! I've been avoiding a lot of exercise because I've been sore but I'm now getting the impression that I'll be less sore if I do more exercise. I'm going to give it my best shot anyway!

Kev

stickywicket

Just for the record, my shoulders joined in a year or two down the line and, from talking to others, I'd say RA there is as common as RA anywhere else though I believe RA more usually starts, like mine, in the fingers.

I had to smile at the exercise / diet thing. My husband has always maintained, contrary to all the evidence :roll: , that he can lose weight by exercise alone. He's always played sports and still does but he does tend to eat a bit too much for the exercise to keep his weight down. Maybe it's a male thing

I hope you get some sort of answer from one of the docs so that you can get to grips with whatever is wrong. The not knowing is the worst bit. Please let's know how it goes.

Saltdog

It would be really unfortunate if this spread to my fingers. I'm also a keen guitar player.

You're not wrong stickywicket. Us men are most definitely delusional when it comes to losing weight. I am trying to sort the diet too though. It's a struggle but there are some excellent recipe books out there now with very tasty but healthy food. The Hairy Bikers 'Hairy Dieters' books are my current favourites.

I'm sure I'll get answers one way or another when I go and see the docs. I'm seeing two rheumatologists so surely one of them will be able to let me know what's going on.

Kev

dreamdaisy

Hello, I've read through your thread and I agree that the initial shoulder issues may well be muddying the waters - seeing beyond past events can be challenging at times. I have two kinds of arthritis (one led to the other) and I also have on-going issues with my feet, plantar fasciitis in the right and Achilles tendonitis in both. I have been doing some exercises recommended by a physio for those issues which were helping a great deal but, in doing those, have mucked up my right knee. Life at the moment is lacking a certain fizz.

My first appointment with a rheumatologist was disappointing in that I was told I had no form of inflammatory arthritis whatsoever. I've proved him wrong! I have a sero-negative auto-immune version, psoriatic arthritis (which is related to the skin trouble but I rarely have psoriasis). It's a complicated business and, because my symptoms were not textbook, it took years for a diagnosis to be made. The good news for you is that you're in the 'system' and I hope some conclusions can be drawn soon: I have witnessed over my arthritic years that the sooner one begins the meds the better the outcome may be. I wish you well. DD

Saltdog

Thank you very much for your support and advice DD.

Sorry to hear that you're having a poor time of it with your feet. I can certainly sympathise with you there. From the little I've read online so far I've discovered that Plantar Fasciitis can be a symptom of arthritis sometimes. I had mine diagnosed by doctors, physiotherapists and chiropodists. It's only when I saw the chief big yin chiropodist that he started questioning it. Although I showed all the signs of PF, I also had pain on my toes and across he top and outer edge of my foot. He performed the squeeze test on my fore foot and I just about hit the ceiling with the pain! That was when he recommend I see a rheumatologist. I've since had the MRI on my foot and have my appointment to discuss the results a week on Thursday. My foot pain definitely differs from PF now I that all the pain has gone from my heel. My fore foot is swollen to the extent that I can only wear loose shoes for extended periods. My normal shoes hurt after a short while.

I already know that if I have arthritis that it's sero negative as I've had my bloods done numerous times. I do usually have high inflammatory markers though. So now it is a case of just waiting to see what they come up with. I'm fairly stubborn in most things so even if they tell me I don't have arthritis I will hound them until they find out what I do have as it's seriously hampering my quality of life right now. If there are drugs I can take which can lessen the effects of my condition I want to be on them and getting on with enjoying my life. This is why I'm seeing two separate rheumatologists and I'd imagine a few different doctors until I get some answers

Kev

dreamdaisy

For me the high inflammatory markers were the clue: mine were in the 160s - 170s so somewhat elevated. Now, thanks to the current combination of meds, they are sometimes too low to be measured but it's all too late, the damage is done. I'm nineteen years in now and know it isn't going to improve! DD

Saltdog

It saddened me to read your post DD. I can tell you're long past the point of acceptance but why are/were doctors leaving it so long before providing treatment? I understand that it's difficult to diagnose when there isn't an RF indication in the blood but in the absence of any other diagnosis, isn't the simplest one probably correct? I've asked myself the question over and over, what else could it be? Believe me, I still hope I don't have arthritis but no matter how much I read I can't find a viable alternative. Also, because of the reasons that many people on here state of getting too little too late, why do doctors not just start people on the meds to see if they help? Personally I'd rather get treatment for something I don't have rather than suffer without help for something undiagnosed. How many boxes must we tick before they help?

Kev

stickywicket

To be fair to the docs, it's not that simple. These are powerful meds (You'd be amazed how many people come on here with a firm diagnosis but refusing the meds because they're scared of them) and, if the diagnosis is incorrect, they might mask what's going on with the true problem. Methotrexate, probably the most common starting med, is (in much higher quantities) a major chemotherapy drug used to treat cancer. Hydroxychloroquine is an anti-malarial drug. You get my drift.

And there are other diseases with similar symptoms. We've had more than one person on here who, eventually, proved to have Lyme Disease not arthritis.

I hope the next couple of weeks will bring some answers for you

Saltdog

Hi Stickywicket,

Fair point as far as the meds go. I should have maybe done a bit more reading before having my wee rant. It's a dangerous place the internet. :?

As you say, the next couple of weeks will hopefully provide some answers for me. I have been incredibly lucky to have such a comprehensive medical insurance scheme with my employer. Since my shoulder first got sore last June, the service has been absolutely invaluable. My GP told me that had I been going through the NHS, I may still be waiting for my rotator cuff repair. As it is, it was diagnosed on a Thursday evening and operated on the following Tuesday morning!!

I still have some hope that all the things going on with my body are unrelated and not arthritis. I'm sure so many of you on here just wanted to know what it was in the beginning. That's where I am just now. I don't like facing the unknown.

Kev

Saltdog

dreamdaisy wrote:

For me the high inflammatory markers were the clue: mine were in the 160s - 170s so somewhat elevated. Now, thanks to the current combination of meds, they are sometimes too low to be measured but it's all too late, the damage is done. I'm nineteen years in now and know it isn't going to improve! DD

I looked back at a text I received from my mother (she works in the hospital laboratory) when she told me what my readings were. She told me my CRP had been 125.8, 109.0 and 205.9 but I really don't know what that means. My ESR was also 66. Again, no idea.

Do you think DD that had you been diagnosed earlier that the damage wouldn't have been done? I'm sorry for asking as I know there's no point wondering 'what if?' but I just want to know how hard I should be pushing to get a diagnosis as quickly as possible.

Kev X

dreamdaisy

As I understand it with the markers the closer to zero the better - yours are certainly on the wrong side of right. I am certain that if I had received the meds earlier I wouldn't be in the pickle I am but I made the error of trusting the GP. I now realise that GPs know a little about a lot but I needed someone who knew a lot about little - even if the first one got it wrong! When I eventually began the meds I had to spend months failing on them before they were changed. Now the thinking at my hospital is that if the entry levels don't work within six to nine months you are put onto the anti TNFs - I think this is why things are getting better up there for the newer patients which is a good thing. DD

rayray

I am in a similar boat to you. Had major inflammation in my right hip for three years so on crutches, had four surgeries on it including a replacement which got me back on my feet. Fast forward five months and my slightly stiff shoulder kicked off big time. Neck joined in a few weeks later. Four years later I have had surgery on my shoulder - rotator cuff repair but the biggest op was the removal of a large bony growth from the top of my arm which had grown into the bicep tendon. Stiffness in my shoulder has come and gone since, is back big time now so can't drive or hold down a full time job. Neck is a mess (confirmed by MRI) and now have problems with my feet, fingers, knees and wrists although these are less troublesome.

What is going on? Who knows. I'm currently under the care of four consultants. None of us knows whether all these issues are linked or random problems with a measure of bad luck. Very frustrating though.

I hope you get some answers soon.

slomo

Hi Kev,
I'm a newbie on this site too and finding it interesting and helpful reading about other people's experiences. I'm also sero negative on he RF. Have you had a chance to look at the arthritis research website yet? I think some-one's sent you a link for it. I've found it extremely helpful as a whole and have spent some time on the 'inflammatory pathway' section (if that's not the right name then it's something like it) It explains about CRP and ESR and so forth.
You seem to be having a pretty rough time getting a diagnosis - fingers crossed you won't have to wait much longer.

all the best
slomo

Saltdog

rayray wrote:

I am in a similar boat to you. Had major inflammation in my right hip for three years so on crutches, had four surgeries on it including a replacement which got me back on my feet. Fast forward five months and my slightly stiff shoulder kicked off big time. Neck joined in a few weeks later. Four years later I have had surgery on my shoulder - rotator cuff repair but the biggest op was the removal of a large bony growth from the top of my arm which had grown into the bicep tendon. Stiffness in my shoulder has come and gone since, is back big time now so can't drive or hold down a full time job. Neck is a mess (confirmed by MRI) and now have problems with my feet, fingers, knees and wrists although these are less troublesome.

What is going on? Who knows. I'm currently under the care of four consultants. None of us knows whether all these issues are linked or random problems with a measure of bad luck. Very frustrating though.

I hope you get some answers soon.

Thanks Rayray. Sounds as though you've been through the mill? I'm not surprised you're feeling frustrated. I can only hope that you find the answers you're seeking soon. I hope that I can get mine soon also. So far, my experience hasn't been as severe as yours but I can see the similaritys. I hope you can still remain positive on your outlook and enjoy each day as it comes.

Kev

Saltdog

slomo wrote:

Hi Kev,
I'm a newbie on this site too and finding it interesting and helpful reading about other people's experiences. I'm also sero negative on he RF. Have you had a chance to look at the arthritis research website yet? I think some-one's sent you a link for it. I've found it extremely helpful as a whole and have spent some time on the 'inflammatory pathway' section (if that's not the right name then it's something like it) It explains about CRP and ESR and so forth.
You seem to be having a pretty rough time getting a diagnosis - fingers crossed you won't have to wait much longer.

all the best
slomo

Thank you for the advice Slomo. I've not had a chance to look at as much as I want to since I joined the forum so far. I'm currently working 12 hour shifts offshore and am using whatever time I can spare online to reply to all these wonderful messages of support. I'll be home on Tuesday next week though so I will definitely be looking in a bit more detail then.

It has felt difficult to get a diagnosis so far but I feel confident I'm on the right track. It's upsetting reading some of the posts on the forum where people who have had to rely on poor GP advice or even poor specialist advice have gone on for so long without answers. I feel so lucky to have the support and resources from my work to allow me to throw so much at it so quickly. My fingers are indeed crossed for seeing the specialists this time home.

Kev