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Apppintment with Rhumatologist
9 Replies
Smartie42 - March 22

Hi everyone

I have been experiencing pain for a while in my feet, knees, legs, shoulder blades, wrists, arms ect for quite a while now and despite having a whole list of blood tests done they have all come back clear. My foot problem has been diagnosed as being caused by tight tendons in my calves which the surgeon wants to cut.

Well my problem is is that I am convinced that I have fibromyalgia as my chiropractor suspected it a while ago. To cut a long story short my GP has referred me to a private rhumatologist and the appointment is next Tuesday. How do I make the most of the appointment, would I be best to write a list of my symptoms even if they seem unconnected to each other as I understand that the symptoms can vary from person to person.

Any advice would be appreciated. Thank you.

Smartie42 x


vavaughn - March 25

Smartie42 -- Best of luck with your appointment with the new rheumatologist. I would absolutely make a list of every symptom you have, even if you think it isn't related to fibro. Fibro is known to mimic many diseases so laying out ALL the symptoms is very important. I would also start TODAY a journal of your day.

-What time you got up
-How long it took you to get out of bed
-How long it took for the stiffness to subside
-Periodically through the day (say 5 times) record your pain on a scale of 1-10 and rate your fatigue on a scale of 1-10.
-Any medications you took and what time, relief from medication (if any)
-What time you go to bed
-Approximately how long it took you to fall asleep
-How you slept -- how many times you got up in the night, if it was a restless sleep, etc.

It seems like a lot to write down but it really helps. The longer amount of time you journal, the more help it will be to your rheumatologist. I would show the journal to the doc on your first appointment. A good rheumatologist will take the time to review it with you.

It is usually a given that you will have a follow-up appointment. I would keep journaling in between appointments and share the new information with him/her.

Best of luck! Keep us posted on your results and progress.


Smartie42 - April 25


Thank you for your advice and your kind words. Sorry it has taken me so long to get back with a reply but it has been a hard couple of weeks.

The appointment went well. The doctor spent lots of time listening to my symptoms, checked me over and ordered a batch of blood tests. The long and short of it is that I definitely have Fibromyalgia but also possible Sjogrens Syndrome too.

The blood tests have come back inconclusive apart from my blood proteins that are low and my hemoglobin is very high which would indicate an inflammatory disorder.

I have been put on Palequin for six months to see if that helps the diagnosis but either way I have fibro.

Does anyone else have sjorgens too and can they give me any advice on how to deal with this. Thanks for your help.


January - April 25

Hi smartie 42 -- what is Palequin? Never heard of it and couldn't learn about it by googling. Is it supposed to help with fibromyalgia or is it for the hemoglobin problem? Thanks for any info. Just interested. Hope you are doing better!


Fantod - April 26

smartie42 -

Early diagnosis and treatment are important for preventing complications. Unfortunately, reaching a diagnosis can often be difficult and has been found to take an average of 6.5 years from the onset of symptoms.
Sjögren’s syndrome symptoms frequently overlap with or “mimic” those of other diseases including lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis. Dryness can also occur for other reasons, such as a side effect of medications such as anti-depressants and high blood pressure medication.

There is no single test that will confirm diagnosis. Rheumatologists have primary responsibility for diagnosing and managing Sjögren’s syndrome and can conduct a series of tests and ask about symptoms. An international group of experts formulated classification criteria for Sjögren’s syndrome which help doctors arrive at a diagnosis. These criteria consider dryness symptoms, changes in salivary (mouth) and lacrimal (eye) gland function, and systemic (whole body) findings.

Blood tests your physician may perform include:

•ANA (Anti-Nuclear Antibody)
ANAs are a group of antibodies that react against normal components of a cell nucleus. About 70% of Sjögren’s patients have a positive ANA test result.
•RF (Rheumatoid Factor)
This antibody test is indicative of a most often performed for the diagnosis of rheumatoid arthritis (RA) but is positive in many rheumatic diseases. In Sjögren’s patients, 60-70% have a positive RF.
•SS-A (or Ro) and SS-B (or La)
These are the marker antibodies for Sjögren's. Seventy percent of Sjögren’s patients are positive for SS-A and 40% are positive for SS-B (these may also found in lupus patients).
•ESR (Erythrocyte Sedimentation Rate)
This test measures inflammation. An elevated ESR indicates the presence of an inflammatory disorder, including Sjögren’s syndrome.
•IGs (Immunoglobulins)
These are normal blood proteins that participate in immune reactions and are usually elevated in Sjögren’s patients.
The ophthalmologic (eye) tests include:

•Schirmer Test
Measures tear production.
•Rose Bengal and Lissamine Green
Eyedrops containing dyes that an eye care specialist uses to examine the surface of the eye for dry spots.
The dental tests include:

•Salivary Flow
Measures the amount of saliva produced over a certain period of time.
•Salivary scintigraphy
A nuclear medicine test that measures salivary gland function.
•Salivary gland biopsy (usually in the lower lip)
Confirms inflammatory cell (lymphocytic) infiltration of the minor salivary glands.
Your physician will consider the results of these tests along with your physical examination to arrive at a final diagnosis. Further research is being conducted to refine the diagnostic criteria for Sjögren’s syndrome and to help make diagnosis easier and more accurate.

You should definitely have the salivary gland biopsy to be sure that you do have Sjogrens. My best friend has it along with severe RA, Hashimoto's thyroid and Fibromyalgia (FMS). Sjogrens must be managed very carefully.

It is extremely important that you see all of your doctors at least every three months and have a full physical every year. Special attention should be paid to your eyes and teeth. The lack of saliva affects both your digestion and teeth. You should schedule more teeth cleanings - 3 a year is recommended. Saliva decreases friction; Sjogrens/dry mouth will definitely cause more wear to your teeth.

You may also experience more problems with your vision due to dry eyes. Plugs can be put in the tear ducts to increase moisture and/or specific prescription moisturizing drops are available. Either way, it is likely that you will need to change your eye glass prescription more often.

Go online to read more about sjogrens at the Sjogren's Syndrome Foundation website. Knowledge is power. Take care.


Fantod - April 26

January - smartie42 probably meant: Plaquenil.


Smartie42 - April 26

Hi January & Fantod - sorry I meant Plaquenil. That's what comes of not looking at the spelling on the box before I posted! Apologies again.

Fantod - thank you for all your advice. It was most helpful and I shall certainly make sure that I keep eye appointments and dental appointments up now as I have been told how important it is with Sjogrens. The Plaquenil is still making me feel pretty rough although I have been only taking it for three weeks so far. I feel bloated and sick and find that I can't eat much because of this. I have been told that this will be short term and once my body gets used to the drug that this will ease off. I hope so I have had bowel surgery in the past so it doesn't take much to upset me in that department!

Anyway I shall try to remain positive and see what happens over the next six months when I will see the Rheumatologist again. If there is no improvement in the symptoms by then she will take me off this drug and treat me for the fibro. There just seems so much to indicate it though including Raynauds Syndrome, dry eyes, fatigue, nail fold problems and aches and pains that it seems likely.

Thanks again for the advice and support it is much appreciated.



January - April 26

I started to respond last night because it made me cringe to read the surgeon wants to cut your tendons! I've learned the hard way that most surgeons suggest surgery - and it is irreversible once you do it, so you better make SURE it's absolutely needed. Also, they rarely inform you of ALL the serious risks of anesthesia and infection. I just read online about a girl who DIED undergoing very routine (and unnecessary) wisdom tooth extraction! Anyway, don't know if you've tried orthotics for your foot problem…? I've heard they really help some people if they are custom fitted by a good podiatrist. And maybe the pain is fibro pain - that you can treat with meds?

Just learned a lot today by reading Fantod's post about Sjogren's. I have dry mouth and eyes - but nobody has ever suggested running the tests you listed. Research is in order here! Thanks for the education!

Plaquenil is a new one on me -- wikipedia has some good info about it. Hm! It is used to treat RA and Lyme Disease also! Increases the pH in the body (making it more alkaline - which helps to kill off all kinds of bad stuff). Interesting! (Ties in to my theory that fibro is caused, or aggravated, by infectious agents!) It can cause serious eye problems - so Smartie, I hope they warned you about that. I wish they could come up with drugs that didn't have such side effects or make people feel worse!

Anyway, Smartie, hope you are doing better soon with a proper diagnosis and treatment. Fibro sucks, but there are ways to make it somewhat better, so hang in there!


Smartie42 - April 27

I am pleased to report that the Rhematologist told me not to have the surgery to cut my tendons. Actually she was pretty cross that he had suggested it without even bothering to find out what the root cause might be for my pain.

I have been wearing orthotics for the last two years and for a while ankle braces but these have not helped too much hence the referral to the surgeon. I have now taken my name off the surgical waiting list and will see what happens with the pain now I am on the meds. It's the tiredness that I find most difficult at the moment though even if I have a good nights sleep I still feel exhausted the next day. I sure hope that gets a little better as it's no fun being in a busy managerial job all the time and being exhausted.

Thanks to everyone for their good wishes, hope you all have a good day :-)

PS - how do I read the second page of replies - been trying to work it out and I'm stumped. Thanks.


Fantod - April 27

smartie42- Now Iam really confused. Did the doctor do a saliva gland biopsy to determine if you have Sjogrens? Or, are they just assuming that you do based upon other symptoms such as dry eyes, dry mouth etc? If so, I'd be demanding that they have the saliva gland biopsy done to be absolutely sure. It is a simple procedure and should not cause you too much discomfort.

I know that you are in the UK medical system but I have problems with any doctor prescribing a drug like Plaquenil without proper and complete testing. That's like shooting in the dark at a target. If you don't acutally need the medication than you should not be on it.

Sjogren's is a very serious autoimmune problem. No one should be told they have it unless it is certain. It requires very diligent medical care and has life long complications including muscle, nerve, liver and kidney problems among others.

Yes, people with Fibromyalgia can have also have Sjogren's. Nonetheless, have you been checked for thyroid issues which can also cause widespread pain and other problems?

And, since Sjogren's is inherited, does/did anyone in your family have a history of severe arthritis, lupus, thyroid disease or type 1 diabetes? Clearly something is going on if your inflammation rate is high but Sjogren's may not be it. Honestly, I don't know what the medical profession is thinking at times.

A dentist usually does the saliva gland biopsy. If it has not been done, see if you can figure out a way to get that accomplished. Then you will know for sure if it is Sjogren's or you have another underlying problem. And, if it was at all possible, I'd be seeing another rheumotologist. Good luck and take care.



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