Perhaps I'm wrong

[Jayne]

I will try not to go on too long but this is an update so far. I thought I'd found the answer to all my symptoms when I was researching my swollen parotids, it seemed as thogh I'd joined all the dots as it were.....

My dentist referred me to the Oral Medicine dept at Guys hospital and I have been for two appointments there so far, because of the severe allergic reaction I get when the parotids swell, Dr Escudier gave a possible diagnosis of 'Angio Oedema'. The blood tests he requested have (I am not sure which ones) indicated that this is not the case. I have however, got multiple strictures in the parotid ducts on both sides and an inaccessible calculus. I have got to go for balloon dilation of the strictures as soon as an appointment comes through, following that I have to see Dr Escudier in about six months time.

In the meantime I have seen a GP who did blood tests in November for CRP, Double stranded DNA, ANA and ESR, all of these have shown no reason for concern. I was told to go back if I was still getting symptoms (as I said, negative results do not make symptoms that you've had for years just disappear) She then advised me to see another GP who specialises in Rheumatology though he is not a Rheumatologist as such.

I saw him this week and was very nervous as I do not want to be thought of as a post menopausal hypochondriac. He was very nice but I felt he was sceptical of my thoughts.
At this point can I ask a question, are joint pains associated with Sjogrens always caused by RA? I already have OA in my lumbar spine and the doctor said that the constant pain I now have in my wrist is also OA. The pains in my elbows are definitely 'golfers elbow' caused by carrying shopping and the pains in my knees were something else.

The fatigue that I have suffered from what  seems like forever is the menopause and so of course is the vaginal pain. He could not put the Raynauds down to  anything else though.
So I think that based on that he has requested further bloods Rheumatoid factor, ANA (+Ro and La), Immunoglobulins as well as Bone profile and Liver profile. He hasn't totally dismissed Sjogrens but if none of the tests show anything he will not refer me. He mentioned a lip biopsy but said that he wouldn't advise it because of side effects.

I have to go back when he has the results so I will let you know how it goes, though I really don't expect anything significant to show in the results.
Thanks for listening,
Jayne

[Scottietottie]

hi Jayne 

It sounds to me as though you've been joining the dots but the docs aren't. Your GP - based on blood tests - seems to be treating all the symptoms as though they are totally unrelated.

Of course we can have other things as well as SjS. As far as I know - osteoarthritis is not caused by SjS. The pains one gets from SjS are NOT always RA though. It's possible to have inflamed connective tissue and that can cause joint and muscle pain. I have OA in at least one knee and both shoulders and possibly elsewhere but when the top of one shoulder and my neck get sore, my GP recons that's inflammation - not OA and the two together can be an uncomfortable mix.

Good luck with the test results. I hope they take you further forward. Keep us posted.

Take care - Scottie 

[lynnmarie219]

"Listening" is what we all do best here...it helps to get things off of your chest and put it down in writing.

I hope you get some answers from all of these tests so they can effectively treat you.....and even if they don't want to give you a diagnosis based on all of these symptoms (which by the way do seem to fit into a sjogrens diagnosis...but who am I? Certainly not a doctor!) then I hope you have a doctor who is open minded enough to at least treat your symptoms separately so you get some relief!

As far as your other question...I also have the muscle and joint pain you mentioned and mine is caused by the sjogrens, fibro, and OA....I don't have RA.

Keep us updated on how it goes for you when you get all of the results.

 

[Jayne]

Thanks Scottie and Lynnmarie, I will keep you posted but it will be some weeks before I know any more. Two weeks before blood tests, the NHS wheels move very slowly.
You are all such good listeners,
Jayne

[Babs659]

I did recently read that the joint pain from Sjogren's does not cause deformity of the joint, unlike RA.

[irish]

It sounds as though you have tendonitis in your elbows. Tendonitis is very common in people with sjogrens. Carpal tunnel is also a problem that many people have and also the achilles tendon can give people fits. I had tennis elbow for years and would have to wear a brace a lot to keep the symptoms down during any activity.

Yes, it does sound like your doc is separating all your "owies" and giving them a different name. I would hope that he would know that sjogrens causes all sorts of problems. Also, angioedema is an allergic reaction and people with sjogrens or any autoimmune disease are more likely to have hive issues or swelling with redness. Obviously, your salivary ducts are damaged and you have a stone very likely caused by sjogrens. None of my ANA, Double stranded etc were negative for years and I just kept getting sicker. They did not convert to positive until after many years of problems and running from one doctor to another.

If you have Reynauds it is very likely that you have another autoimmune disease. Have they checked you for Hashimotos or autoimmune thyroid disease. Sjogrens is often found with Hashimotos and RA. Also, the osteoarthritis is something that a lot of the population has as they get older. Aches and pain in joints and muscles are very common with sjogrens and the fatigue can be overwhelming. Hope your doc can get in gear and put the symptoms together. Can you print off an article from this site that or the web that talks about all the problems that Sjogrens patients can have. It isn't just dry eyes and mouth. Good luck. Irish

[pudmott]

Jayne

through all this you will come to appreciate the term "hurry up and wait"

it can take some time for these things to be sorted. Hang in there buddy. htere is light at the end of the tunnel


Pud

[irish]

Jane, I just re-read my post from last night and I sure sounded like a bossy, know it all. I apologize for coming off like that. I am not a doctor but can relate to the docs having all these different opinions. It has happened to all of us in one way or another. It really is a hurry up and wait situation trying to get diagnosed. Also, autoimmune is not a disease for sissies as one must just perservere until you think you can't make one more doctors appt and then finally, somebody gives you a diagnosis. Hope that you can hang in there for this to happen. Good luck. Irish

[kim31072]

Irish here is an excellent one..very thorough and informative..hope it helps

http://dry.org/fox20020816/guide.htm

Kim

[Jayne]

Irish, please don't think that you sounded bossy, I didn't read it that way at all. I am grateful for all responses.
Thanks again
Jayne

[Jayne]

One thing I forgot to say was when the doctor asked about dry eyes, I said that they  aren't exactly dry but my vision gets blurred. I find it difficult to describe but it is more like a film over my eyes. I can be reading quite happily one minute and then find I'm struggling because of the blurriness. This gets really bad on an aircraft when I have all the time in the world to read, and have to give up after a few minutes.
Anyway the point I was going to make is that he said if my eyes didn't feel gritty then it was unlikely to be Sjogrens.
Jayne

[JannaLee]

Hi Jaynie,

I only have Sjogren's Syndrome and Raynauds. 

One of my worst symptoms is TERRIBLE joint pain and muscle aches.  I do not have RA or any other type of arthritis. 

Another worst symptom is fatigue.  Coincidentally, I thought mine was from menopause too.

In my opinion you need to be seen by a rheumatologist.  If your primary doc will not refer you, maybe it's time to see his partner or change to a different guy?

I'm so sorry for all this!
Janna

PS.  Irish
You never sound bossy and since you DO "know it all" your remarks were perfect!  I love to follow your posts with "I agree with Irish..." or "Irish is right..."  I makes me look smart too!

[Jayne]

Went back to Doc's on Thursday, he is still separating the issues. All blood tests normal as I suspected they would be. I don't like him, he seems very self opiniated. At the moment I have pain in both elbows my right knee (behind the knee) and my right wrist. He asked me which was the most debilitating and I said my wrist (I am right handed) he still insists that it is arthritis, but I am not convinced, would the pain of OA escalate in the last six weeks to the extent that everything I do causes pain? All the little things like cleaning teeth, dressing, writing etc etc the list goes on (dropped a teapot full of tea the other day, luckily it was cold). The pain is on the inner wrist bone and thumb movement seems to cause it to hurt more. I wish I could describe it properly. He suggested that I take codeine/paracetamol for the pain and Ibuprofen when it gets really bad, I though it was the other way round, perhaps one of you nurses can help me with that one. I have no swelling at any of the joints.
For my knee he said that I really should excercise more (I'm on the go all day at work), that isn't excercise he says you should do running and jogging. I thought that was bad for knees?
Have taken to wearing a wrist brace just at work, which I didn't really want to do because I'm afraid of making it weaker. He has said that he will give me a cortisone injection, but I have an appointment in two weeks time for that.
Think I will have to go back to the other doctor and at least request an xray to confirm the OA diagnosis.
Sorry to go on, but he depressed me again, at the age of 53 I feel like an old crock at the moment.
Hope you all had a good Easter weekend, I was at work today, the only day that we had good weather, typical!
Jayne

[Linda196]

Jayne, I think you're right about going to the second doctor...the one you just saw seems to have his very own theories and approaches that don't appear to go along with most accepted medical practice!

While strengthening exercises (shallow squats, lunges and leg lifts) are excellent for the support system around the knee and may improve arthritic symptoms, high impact exercises like jogging are usually avoided. In most cases, plain Tylenol or NSAIDS are suggested for "everyday" pain, and narcotics like codeine (or combos containing codeine) are used for more severe pain.

Of course I can't diagnose anything, but what you say about your thumb and wrist sounds remarkably like pain that I had that was diagnosed as deQuervain's Syndrome (a type of tendonitis)...maybe you could search for that and see if you feel it applies. If that does prove to be the case, NSAIDS would provide more relief because of their anti-inflammatory effect.

An x-ray may not tell you much, because OA doesn't show up until it is severe and has caused noticeable bone damage.

[Chickpea]

Hi Jayne

I think you're right that you need to see another doctor.  Is the one you've just seen the 'rheumatologist-who-isn't-a-rheumatologist' that you mentioned?  You're entitled to consult another specialist through your GP.  Maybe ask around for recommendations;  I have a great rheumy here in Brighton and I've heard there's a very good one in Birmingham.  It might be worth the journey.  (Having said that, I think you'd be hard pushed to find a doctor who isn't 'self opinionated' as you say your current one is!!)

Like the others I can't diagnose anything, but I have to say that your pain sounds very similar to joint pain and weakness that I have and that I've been told is SjS related;  but also similar to a friend who has RA.  The difference seems to be that in SjS we don't get joint distortion although the pain and disability can be just as severe.  Dropping the teapot could also be SjS related and that's to do with weakness and/or neuro issues.

Linda's spot on about both exercise issues and pain meds.  In both cases it sounds as though the doctor got things the wrong way round.  Paracetamol & codeine is not something you want to be taking long term; a cover of paracetamol (ie 8 tablets a day) is often prescribed for generalised pain and can be more effective than you might think.  But many people find codeine hard to adjust to.  Ibruprofen and stronger NSAIDs would work with the paracetamol and actually address the inflammation issues.  Your GP should be able to help you work out the best programme of pain meds, or refer you to a pain clinic.

I love the idea of us all jumping up and going jogging.  What an obvious and helpful suggestion for him to make!  After a day at work on our single sunny day I think the most exercise you should do is lifting a tea cup to your lips and maybe a slice of chocolate cake.

Have a restful evening and take good care of yourself - Chickpea