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Plinksgirl

So many questions and totally confused

19 posts in this topic

Hello All,

 

I am new around here although Ive been reading on the site for over a year.

 

I am currently seeing the Doctor that took care of my Mother during her battle with Systemic Scleroderma, Raynauds and Lupus. I have a multitude of questions so please bear with me...

 

When you have that many auto immune issues is that the mixed connective tissue disease?

 

Okay, please know that I realize you are not medical professionals but, who else is better to ask than people that are experiencing the issues?

 

I have received 3 positive ANA IFA test first one was 1:180 Homogenous, next was 1:80 homogenous and the last was the same as the 2nd. I was informed that unless my sed rate is high than I have nothing to worry about.

 

The problem is...the joint pain seems to be getting worse and I am having a hard time deciphering between muscle pain and bone pain :emoticon-dont-know: I know that sounds silly but, when I hurt I seem to hurt like I have been beaten up. Although at times I can point to a specific joint and say this one is hurting. I was informed that at my age I "really DO NOT want a diagnosis". Okay I understand that because of the insurance issues but, I still want to know something...right?

 

I guess I feel as some of you have said...Like I am in LIMBO.

 

 

Thank you for listening and ANY advise is appreciated.

Plinksgirl

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Here is a link for Mixed Connective Tissue Disease: Mixed Connective Tissue Disease

 

Many, if not most us, have a mix of autoimmune disorders. My rheumatologist uses the word "Mosaic" - each patient seems to have a unique mosaic of illness. For instance, I have slow-onset (CREST) scleroderma, Sjogrens Syndrome, pulmonary hypertension, myositis - but oddly, without any esphogeal symptoms. Raynauds is sometimes a symptom of scleroderma or autoimmune disease.

 

Since treatment is directed toward specific symptoms (since there is no cure), that is usually most important. For instance, if finger ulcers are a problem, increased circulation is desirable. Inflammation may require anti-inflammatories. These issues need to be worked out with your doctor.

 

Regarding your tests - unfortunately, this disease relies heavily on symptoms for diagnosis. Tests suggest possible areas of trouble, but unfortunately you may just have to wait and see how it goes. Your normal Sed rate indicates that there is no inflammation going on (at the time of the test. Another good test for inflammation is C Reactive Protein.

 

I have experience with the joint/muscle issue. I had an x-ray at a time of great pain, with no sign of joint disease. Since then, it has become quite obvious that the problem is muscular. This because it travels, and can effect such areas as the diaphram, with obvious "myalgia" or "myositis" (inflammation of muscle). Your description of feeling like you've been beat up is very apt! I feel the same way, or might also describe it as like muscles that have been seriously overworked to great pain. Steroid medication is the only help for a serious attack, though I prefer to minimize the use of it because of potential bad side effects.

 

Unfortunately, too many of us seem stuck in limbo at times. Hopefully you can get some relief from symptoms.

 

Good luck,

 

Craig

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Hello Plinksgirl

 

Welcome to the forums! Having symptoms without a diagnosis is very difficult but then so is having a diagnosis, as you have pointed out. Whilst you're going through this journey post often so we can support you as best we can. :emoticon-hug:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thank You for your kind words and helpful information.

 

I look forward to getting to know you guys and gals and hopefully one

Day find some kind of cure for this madness!!

 

Plinksgirl

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Hi Plinksgirl,

 

Welcome again to these forums!

 

It can be very frustrating to get an exact diagnosis as Scleroderma and other autoimmune diseases can be notoriously difficult to diagnose. I'm assuming that you're being treated by a Scleroderma specialist as you're seeing the doctor who dealt with your mother. It is very important to be dealt with by an expert as sadly many rheumatologists do not have the specialist knowledge to treat this complex disease.

 

I also suffer with joint pains, so can empathise with the discomfort you're suffering. Once I was put on my medication, my joints certainly felt better but I do understand what you mean by varying joint and muscle pain. I've included a link to hand and joint involvement in Scleroderma which I hope you'll find interesting and informative. Also, now you've found our forums you will be able to get lots of support and help from our community.

 

Do keep posting and let us know how you're faring. :emoticons-group-hug:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Plinksgirl,

 

So glad that after a years' plus time of perusing the forum(s), you have posted a thread so we can get to know you and offer our best to you.

As I'm sure you know, we have a wonderful (library) of medical information. Yet, as you already spoke to, with our Sclero Family, there are so many with chronic health experiences of their own to share and will likely strike a familiar chord with you, in the process.

 

I am hoping that by now, you are on medication that is helping with the pain you are experiencing. Because you have the pain, but are having trouble deciphering which is what, it's possible that inflamed muscle can also raise havoc with joints/bones; Liken it to a pinched nerve or a spurring on a heel, for example.

 

I can appreciate your feelings, in wanting to know what you are dealing with, as I have always felt the same.

 

My hope is that you post often and utilize what is offered here, in the way of support, information, caring and last but not least of all....Friendship :emoticons-group-hug:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Susie

Currently the only meds I am on is over the counter, typical headache type meds. The doctor is not wanting to have me on anything yet as to help me decipher what's going on. I am taking the good ol' joint vitamins though. I go back to see him in a week or two and he is going to re-run the blood work and see what is found there this time. I also have been watching different things that seem to affect the pain.

 

Jo

Thank you so much for adding the hand involvement info, I hadn't seen that and it told me a LOT!!

 

I really appreciate all of you

 

Plinksgirl

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Pinksgirl

WELCOME!!! I am sorry you are going through this, it STINKS!! Feeling beat up is such a great way to put it, I think most of us feel the same way, I am on a med for my Raynauds and one for the Acid reflux but other than that unless I have an ulcer I also take over the counter meds.. Keep us informed, use the medical "library" it has great stuff for any questions you may have and remember no question is a silly one, and we are here with lots of hugs for you

Glad you posted

Marsha :emoticons-group-hug:

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Hi Plinksgirl,

 

Welcome to Sclero Forums! I'm sorry your mother had scleroderma, and that you have some concerns about your own health as well. I can offer some information that might set your mind at ease, a bit.

 

As I understand it, even though an ANA of 1:80 is listed as "positive", it is widely considered to be "negative". Also, there tends to be higher incidences and levels of ANA in relatives of people with connective tissue disease. Often they might even develop a symptom or two of connective tissue diseases, without ever developing a full blown disease of any sort.

 

As it happens, I have had bone pain, joint pain, and muscle pain. I know it's confusing but here's the way I sort it out. If it is not hurting in a specific bone or joint (and stays in a specific spot for a length of time), then it is muscle pain. If it hurts in a very confined area, that you can draw a line with, radiating from a joint, then it is likely a tendon problem. If you wake up feeling like you've been run over with a truck, then it is likely what you would call widespread muscle pain. That can be caused by sleep disorders, an old mattress, old or poorly fitting shoes, depression or anxiety, new or different exercise, etc. If it persists despite remedying everything you can think of, then a thorough physical, including a fibromyalgia tender point exam and possibly sleep disorders testing as well as anything else your doctor recommends, are in order.

 

It rather sounds like you've been through the mill already. If your ANA remains negative (so to speak), your joints are not the primary issue, and other markers of inflammation (like SED rate) remain negative, then odds are fairly good you might "only" have the muscle pain to deal with. As it happens, muscle pain is not a diagnostic symptom for scleroderma. It's possible, then, that you might be out of the woods for developing any further illness but of course you will still want to follow any monitoring your doctor has recommended. One concerning thing is that if the medical focus is only on scleroderma (and such) then things like fibromyalgia can easily be dismissed or overlooked. So you would want to see what you can do to identify everything that is possibly causing or could potentially relieve the muscle pain.

 

That said, you must keep in mind that I am not a doctor, I have no medical training at all, that I only know a very teensy portion of the issues at hand, and that I may be wrong -- I often am, and plenty of folks here can attest to that!

 

So, here's a big welcoming hug, in hopes that your health begins improving as things are identified and treated properly.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Update soon.

 

Hope to have blood work results soon. Will update you guys when I hear. Your comments and information is truly appreciated. Attended the walk on Saturday and met some wonderful people!

 

You guys are great.

 

 

Plinksgirl

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Hi Pinksgirl,

 

Welcome to the Forums. You've received some great advice a good links, that I hope you find helpful. My advice is to listen to your gut. Push until you feel comfortable with the answers. :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Got a call today saying that all of my blood work came back normal. It's not that I want a disease, I just want answers to why I hurt?

 

 

Grrrr,

Plinksgirl

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Aw, how frustrating! Sorry you didn't get an answer to why you're having pain. I only have mild issues with my joints, however two things that improved it was fish oil and going gluten free when I was diagnosed celiac. Hope you find some relief and/or answers!

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Hi,

I can add to Chopper's comment about diet. Our daughter suffered from sore joints ever since she was about 10 years old.

 

Nothing helped until she put herself on a Gluten Free regime about 4 years ago. Now if she has a 'sore' day she looks back on what she has eaten and can usually find a culprit.

 

It is worth a try - can't hurt you as long as you have a varied and healthy diet.

 

JudyT

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Hi Plinksgirl,

 

Fortunately, scleroderma would be one of the least likely causes of pain, simply because it is so very rare and only about 2% of the time is it hereditary, so 98% chance it is not (for you).

Fibromyalgia is usually leader of the pack for causing widespread pain, and it is nothing to sniff at. It is very worthwhile to ask your doctors to evaluate you for fibromyalgia. If you don't have it, that would at least help to narrow down the search a bit more.

 

I also have to agree regarding the gluten, especially since there is some sort of relationship between gluten and scleroderma that doctors are still investigating. Also Vitamin D (the sunshine vitamin); it is worth getting tested to see if you are deficient in that, as well (because a deficiency can cause joint and muscle pain).

 

While you are trying to nail down the cause, keep in mind that it can also be multiple causes, and remedy everything you can think of, such as getting an ideal mattress, sturdy well-fitting shoes, some tolerable exercise every day, healthy diet (with or without gluten), and stress reduction. You might stumble across an easy answer and then again, you might not, so remember to work in conjunction with your medical team for answers. Here are some warm hugs to tide you over.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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:emoticons-clap:

 

I finally feel like I am getting somewhere. Went to a new doctor today, first looked at my X-rays he stopped and looked in detail at it 3 more times. He then walked out and came back in stating that he believes that we are looking at Rheumatoid Arthritis. As silly as that sounds I am just glad that I am finally being heard. 4 new scripts and I go back in 4 weeks. I am hoping that we can get this joint pain under control!

 

 

 

:woohoo:

Plinksgirl

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Hi Plinksgirl,

 

That's very good news that you seem to be getting a firm diagnosis as I think the uncertainty is one of the worst things to deal with. Hopefully, by the time you return in four weeks to your new doctor you'll be feeling a lot better; I do hope so. :emoticons-yes:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Plinksgirl - glad to hear your testing is providing some answers! I wish you well!

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Hi Plinksgirl,

 

I'm delighted that you are making some progress towards a diagnosis. :emoticon-congratulations:

:emoticons-line-dance:

 

I'm sorry its rheumatoid arthritis (RA) but at least it should help identify some treatment options.

 

At the same time, I'm sorry you have rheumatoid arthritis. That's a lot to deal with, and I'm sending some warm, but gentle, hugs, just for you.

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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