View Full Version : What next?

05-17-2011, 11:55 AM
Hi everyone, my name is Tocki and I am just so confused right now and need some guidance on my next step.
About 10 years ago my hair started to fall out in patches but would grow back in, I started having pain throughout my entire body and was tired all the time. Doctors always said take ibuprofen or naproxen for pain and really just discounted my pain as "in my head". So I pretty much gave up until recently. I went to a new doctor because the pain in my joints is unbearable at times, the bald spot in my hair can't be hidden (i've been wearing hats and praying the hair will grow in soon) and my fatigue is hindering me from getting anything done. I work, go to school and have 3 kids. I am flunking my classes because I am soooo tired :0(

I had a blood test for rhuematoid arthritis that came back negative and a positive ANA last month and a urinalysis yesterday that came back negative also. Do I continue to insist that further test be done, or is it pretty certain that its not Lupus? I am so frustrated and tired of these symptoms, I just don't know what to do, and this new doctor seems not to be really concerned about all my symptoms. I had to insist that we do the urine test to be sure, she didn't even want to do it. Any advice would be great!

Linda From Australia
05-17-2011, 11:59 AM
Hi Toki, you could ask yor doctor to run some more tests. Perhaps what you should do is to document all your symptoms and how it is affecting your life. Make a copy for yourself as well. Keep a note book in your bag and next to your bed where you can jot down anything when you think of them.

Have you had your full blood count done to test you for anaemia? As for your schooling, can you take less classes so you can focus on a smaller number and get higher marks?

05-17-2011, 12:14 PM
Hi Linda,
I started a journal for my symptoms a few days ago, I go back to my doc in June so I will take it with me then. I am only slightly anemic and have a vitamin D deficiency, for which I take iron and doc has me on 50,000 units of Vitamin D. Its embarassing to admit that I am only in school part time and still I struggle to keep up. I was able to move my work shift so that I could get more study time, but most times I fall asleep in my books and its so hard to process information when I am tired. Seems like everything is a blur and I can't remember anything unless it write it all down.
What other test should I ask for? Also, she mentioned sending me to a rhuematologist but I wonder if she will since the urine came back negative.

Linda From Australia
05-17-2011, 12:19 PM
Perhaps you could phone your doctor and ask to be sent to a rheumatologist because if you wait until June to ask, then you will be waiting another couple of months. The Rheumatologist will know what test to run

Linda From Australia
05-17-2011, 12:23 PM
As for your study, set a timer to study for 30 minutes, then have a 15 min break. Then get back to it again for another 30 minutes. Then have a 20 minute break, 30 minutes study, 30 minute break. 30 minute study, then take an hour break. That way you can focus all your attention on your study instead of trying to sustain quality time.

There is nothing to be embarrassed about not coping with studying part time. Next time you enrol, see if you can cut down your sudy load if you are not coping at the moment, then you can perfect a good study routine. When you have worked out a good routine, then you can enrol in more units later on. What are you studying?

05-17-2011, 12:24 PM
Thank you for your help Linda! I will come back and update my progress :0)

05-17-2011, 01:11 PM
Hi Tocki,

Welcome to WHL and lovely to have you with us.

From what i've just read get on the phone to your doctor and persist on being sent to a rheumo, if you've not got lupus you've got a stong possibility of some under lining Autoimmune disease, as they'll run blood tests and most likely do x-rays.
I always mention this because it is important if you do have Lupus in your system and blood reading's come back negative it's a known fact Lupus fluctuates the blood, so a reading could be positive and show negative.

We all suffer with the fatigue and i had the patches in my head in the past the size of a 50p they've grown back but not my natural colour but grey but it may not work with you like that because i'm 42 but please be persistent with your doctor.

((Hugs Terri)) xxx

05-17-2011, 01:19 PM
Linda, I will give this a try. i am studying business management and expect to be finished in March of next year. I am so close, I really don't want to cut back on classes. I may have to though

05-17-2011, 01:23 PM
Thank u Terri, The bald patches are the worst part because its the one thing I can't really hide. I usually use black eye pencil or a sharpie marker to hide them.

05-17-2011, 01:34 PM
Thank u Terri, The bald patches are the worst part because its the one thing I can't really hide. I usually use black eye pencil or a sharpie marker to hide them.I was told to use those Tocki because my hair was very long and the first patch developed by my right ear as i used to tuck my hair up and then when more lose hair was coming out, i skinned it onto grade1 and that's when i saw the 50p patches, i've let it regrow back into the bob but when i have shower the plug hole is dead full.lol

05-17-2011, 01:57 PM
Hi Tocki,

I agree with the others that you should see a Rheumotologist. The patchy hair loss is called Alopecia Arreata, and it's actually the symptom that lead to my Lupus diagnosis. I had two half dollar sized patches fall out on the back of my head. After I got my disease activity under control with meds, it grew back, and it has not happened again. Lupus can be very hard to diagnose, as are most autoimmune disorders. You may have to be really persistent in your search for an answer/diagnosis. Don't let anyone tell you it's just all in your head, that's just a lazy doctor cop-out.


PS-Welcome to our group!

05-17-2011, 02:07 PM
Rob, I agree that the doctors are just not interested in diagnosing the problem, I will definitely pursue this until I have an answer. also, I went to a dermatologist about five years ago and got steroid injections in my scalp, about 50 punches with that needle and a massive headache later I decided not to have that done again, I'd rather use my marker!

05-17-2011, 05:09 PM
Tocki, I agree with the others that you should see a rheumatologist. They know what tests to run than a family physician wouldn't. Your urine coming back negative does not mean that you do not have Lupus because it is still a possibility. My urine came back negative several times before I had to go see a kidney specialist. Keep track of things and let us know how you are doing. Good luck!

05-17-2011, 07:23 PM
welcome, and hi.

it is good to see you are doing all the right things.
i agree, ask your doctor now for a referal to the rhuemy. why wait extra months.

05-22-2011, 06:33 AM
Hello Tocki,

How you doing mate and hows your symptoms since you joined, please keep we updated please.

Terri xxx

06-16-2011, 03:16 PM
Sorry I have not updated for awhile. I have not yet been to a rhuemy but went back to my doc Monday. She repeated ANA (negative this time) and did urine test (also negative) and calls to tell me I have Fibromyalgia and to return in a month for a rhuemy referral if the pain has not gone away. I told her I still want the rhuemy referral anyway and she said she would have the scheduling person call with the information. I will wait until tomorrow and call to ask for the info again as no one has called me yet. This is very frustrating. I feel like she should just send me to a rhuemy and stop having me go back and forth to her.

Anyway, my pain is still bad. Right now I think I am getting sick because my skin is starting to hurt too. I had to leave work early today because i felt so bad and I have been wearing hats and scarves because my bald spot is getting too big to hide :0( What is the difference between fibro and lupus? I have not really understood the difference in my reading, can someone explain?

06-16-2011, 04:23 PM
Hello Tocki,

Cheers for updating we mate and your the second today diagnosed with Fibro besides Tammy and i'm pleased your still going to push for a rheumo specialist as they do more extensive blood tests. Yes you re-phone tomorrow mate if you've not heard nothing and dow get being fobbed off because even though your urine came back clear and your ANA the bloods could be giving off false readings which Lupus loves doing, that's why so many member's still keep going for constant bloods.

Sorry the pain hurts and i know how you feel on that score but besides covering well your are wearing sun block besides to help protect you and i'm really sorry about the bald patch, when i saw mine it grew back eventually but grew as i had 3 different area's for some reason if my hair is long the patches develop more.

Tocki i've added info on the difference for you, to understand it more.

((Hugs Terri)) xxx

06-16-2011, 04:24 PM
Difference between Fibromyalgia and Lupus

The chronic fatigue, pain, and muscle stiffness caused by fibromyalgia can sometimes be difficult to bear. This makes it very important to seek appropriate fibromyalgia treatment in order to help you deal with the symptoms of fibromyalgia. Unfortunately, because so little is known about fibromyalgia, many patients are often misdiagnosed. Every year, thousands of fibromyalgia sufferers are actually diagnosed with lupus, a chronic autoimmune disorder. It is important that you recognize the different symptoms of each disease in order to ensure that you are diagnosed appropriately.

What is Lupus?
Lupus is an autoimmune disorder that causes chronic inflammation throughout your body. It can affect any or all of your organs, resulting in dozens of physical symptoms ranging from headaches to irregular heartbeats. Most of us are protected by an immune system that attacks invading bacteria and infections. If you have lupus however, your immune system can’t tell the difference between foreign cells and your body’s natural cells and tissues. As a result, inflammation starts to build throughout your body, causing many physical problems.

Lupus currently affects between 500,000 and one million men and women in the United States. Every year, 16,000 more people are diagnosed with the disease. The majority of lupus sufferers are female, with women accounting for about 90% of all lupus patients. However, both men and children can also develop the disease.

Types of Lupus
There are three different types of lupus.

Systemic Lupus Erythematosus (SLE): SLE, simply called systemic lupus, is the most common form of lupus. Systemic lupus tends to attack the organ system throughout the body, resulting in a wide variety of symptoms. Systemic lupus generally operates in a cycle, during which you will experience periods of symptom flares followed by periods of symptom remission.

Discoid Lupus Erythematosus (DLE): DLE, commonly referred to as discoid lupus, usually only affects the skin and face. It rarely causes complications with internal organs. Discoid lupus is characterized by a red rash, called the "butterfly rash," appearing across the nose and cheeks. It can be diagnosed by performing a simple skin biopsy. 10% of those with discoid lupus go on to develop systemic lupus.

Drug-Induced Lupus: Rarely, lupus is caused by the use of certain prescription drugs. The drugs hydralazine and procainamide, used to treat high blood pressure and irregular heartbeats, have been indicated in drug-induced lupus. This form of lupus is most commonly found in men.

What Causes Lupus?
To date, there is no known cause for lupus. It is believed that lupus is the result of a mixture of genetic and environmental factors. Up to 10% of lupus sufferers have close family members who also suffer from the disease. Exposure to toxins, ultraviolet light, and bacteria also seem to be linked to lupus. Hormones may play a large role in contributing to lupus, especially because so many women of childbearing age develop the disease.

Symptoms of Lupus
Lupus symptoms are quite diverse and can vary depending upon the type of lupus that you are suffering from. In fact, it is rare to find any two lupus sufferers with exactly the same symptoms. Symptoms of lupus can range from mild to severe, and include:

•joint pain
•muscle aches
•sensitivity to sunlight
•Raynaud’s phenomenon

Lupus Treatment
There is no cure available for lupus, however, there are a number of treatments that can help you to manage the disease. Though there was once little hope of long-term survival for lupus patients, recently there have been great leaps in treatment techniques. Most lupus patients now live long and happy lives.

Depending upon your symptoms, you may be prescribed certain medications by your health care provider. NSAIDS are effective at reducing inflammation and joint pain, as is acetaminophen. Anti-malaria drugs are often prescribed for skin irritations and joint problems. New immunomodulating drugs have proven effective at inhibiting the immune system, thereby reducing inflammation.

Exercise is an important part of a lupus treatment plan. Because lupus can affect the joints and muscles, many sufferers stop all exercise. As a result, their pain only becomes worse. Exercise in the form of aerobics, strength training, and stretching can do wonders for those symptoms.

As with fibromyalgia, many lupus sufferers report that acupuncture provides them with great symptom relief. An alternative medicine for lupus, acupuncture helps to relieve pain and stiffness by stimulating certain nerve channels.

Lupus and Fibromyalgia
Lupus and fibromyalgia may look similar on the surface, but in fact they are very different disorders. Unlike lupus, fibromyalgia is not an autoimmune disorder and does not cause any inflammation. It also does not interfere with organ function. However, people with fibromyalgia are often misdiagnosed with lupus.

The confusion between lupus and fibromyalgia may be due to the fact that many of their symptoms are so similar. Like fibromyalgia, lupus symptoms tend to come and go, and can take the form of sudden flare-ups. Like fibromyalgia, lupus is also associated with extreme fatigue, muscle pain, and circulatory disorders. In fact, up to 30% of lupus sufferers develop fibromyalgia syndrome after they have been diagnosed. However, it is very rare for fibromyalgia sufferers to develop lupus.

It is important that you make sure that your health care provider diagnoses you correctly. Many fibromyalgia sufferers who have been diagnosed with lupus have received treatment that has provided them with little or no pain relief and which has instead only complicated their condition. Likewise, if you do have lupus, ask your health care provider to check you out for fibromyalgia, so that you can begin to treat those symptoms effectively too.

06-16-2011, 08:05 PM
Peridot, thank you for that information. I will keep you all updated on what's going on with me. Wish me luck in getting the referral!

06-16-2011, 09:34 PM
Hi tokie, sorry this is the first I am reading this as I have not been in this wonderful group until recently. Tokie, before I was diagnosed I had joint pain and hair loss too. My urine was good and my ANA would test positive and then negative. IT STILL DOES. Here is what I took and my hair grew back. Biotin supplements. There is also a powder that hair salon suppliers sell, that can be put on your scalp until it grows back. I watched my daughter put it on my friends scalp. It made a big difference in appearance. I would definitely go to the rheumy! I have been diagnosed with lupus for 6 yrs now I believe and today fibromyalgia on top of it. I blamed everything on the lupus, but now I see the difference in the way I feel. I have extreme muscle spasms that won't lift in spite of a lot of meds to relax them. It is literally forcing my vertebrae out of place. I will be walking and have stabbing pains anywhere and they just go. If I exert myself like scrub a floor or lift boxes of heavy things, I am in bad shape for days. My skin hurts, and I can't stand to have anyone lean against me.

So, all along I had both diseases and didn't know. Once put on meds for lupus I felt a lot better with the joint pain and blanket fatigue. However, I am tired everyday from the fibromyalgia. On a good note, the brain fog lifted some and I passed my exam to be certified in my mental health work! This can change for you. Please take charge of your medical care, as I have learned the hard way. Read all you can and advocate for yourself. Amazing how many mistakes are made. Get copies of all your bloodwork and your rheumy report. Keep a file, pictures, etc. Definitely stay out of sun, use sunscreen, and sleep when you can. I wish you the best in your schooling. Feel free to send me a personal msg if you want to talk more.

06-17-2011, 02:33 AM
Peridot, thank you for that information. I will keep you all updated on what's going on with me. Wish me luck in getting the referral!Tocki, your welcome mate and i wish you all the best with your referal as it needs doing and we'll wait to hear what's said.

Terry xxxx

06-17-2011, 04:35 AM
i have both lupus and fibro.

i have looked for information on fibro.
some of the best sites i found are:

i have paraphrased notes for my own use.

Fibromyalgia (FM) is a multi-system illness. This illness also produces dramatic manifestations in different organs and systems of the body.
We are not dealing with a localized ailment; rather, it is our main regulatory system that is not working properly.

The autonomic nervous system (ANS) controls the function of the organs and systems. It is "autonomic" because our mind does not govern its performance. The ANS is the interface between mind and body functions.
The peripheral autonomic system is divided into two branches; sympathetic and parasympathetic. The ANS represents the ying-yang concept of ancient eastern cultures.
Sympathetic activation prepares the whole body for fight or flight in response to stress or emergencies; in contrast, parasympathetic tone favours digestive functions and sleep.
Relentless hyperactivity of the sympathetic nervous system continues 24 hours a day. Characterized as a sympathetic nervous system that is persistently hyperactive but hypo-reactive to stress.

There is ample evidence to sustain the fact that FM pain is real as attested by different studies demonstrating very high levels of the powerful pain-transmitting substance P in the cerebrospinal fluid of patients. This means that the problem lies in the pain-transmitting nerve itself.
The most widely acknowledged biochemical abnormality is abnormally low serotonin levels.
The combination of the, high levels of substance P, and low levels of Serotonin, may be the cause of FM

The most common associated conditions include the following:
Irritable bowel syndrome Tension/migraine headaches Dysmenorrhoea
Nondermatomal paresthesia Temporomandibular joint syndrome Mitral valve prolapse
Interstitial cystitis, vulvodynia Female urethral syndrome Vulvar vestibulitis
Hypermobility syndrome Restless legs syndrome Allergy
Enthesopathies Cognitive dysfunction Vestibular disorders
Esophageal dysmotility Ocular disturbances Premenstrual syndrome (PMS)
Anxiety disorders Pulmonary symptoms Depression
Raynaud phenomenon Myofascial pain syndrome Sleep disorders
Thyroid dysfunction Silicone breast implant syndrome Lyme disease
Rheumatoid arthritis Systemic lupus erythematosus Sjögren syndrome
Infections Osteoarthritis Chronic fatigue syndrome
Carpal tunnel syndrome Hyperventilation Vision problems
Multiple chemical sensitivity syndrome

Every-day activities take longer in fibromyalgia patients, they need more time to get started in the morning and often require extra rest periods during the day. They have difficulty with repetitive sustained motor tasks, unless frequent time-outs are taken. Tasks may be well tolerated for short periods of time, but when carried out for prolonged periods become aggravating factors. Activities such as prolonged sitting or standing and environmental stressors such as coldness, excessive noise and rigid time/performance expectations often aggravate fibromyalgia symptoms. They describe a "window of opportunity" for constructive work that typically extends from about 10 am to 2 p.m.

Recent studies have shown that approximately one-third of patients with lupus also have fibromyalgia. It is important to understand that the fibromyalgia in these patients develops after the lupus has become well established.

In general, lupus patients who are undergoing a flare have findings; such as evidence of true arthritis (usually with joint swelling), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. None of these findings are a feature of fibromyalgia

Using single photon emission computed tomography (SPECT); researchers in France were able to detect functional abnormalities in certain regions in the brains of patients diagnosed with fibromyalgia, reinforcing the idea that symptoms of the disorder are related to a dysfunction in those parts of the brain where pain is processed.
The researchers confirmed that patients with the syndrome exhibited brain perfusion abnormalities in comparison to the healthy subjects. Further, these abnormalities were found to be directly correlated with the severity of the disease. An increase in perfusion (hyperperfusion) was found in that region of the brain known to discriminate pain intensity, and a decrease (hypoperfusion) was found within those areas thought to be involved in emotional responses to pain.

i hope this makes sence to you.
feel free to pm me if you want to discuss anything further.

06-20-2011, 05:10 PM
Steve, thank you for the information. I will continue to educate myself on both diseases. In the meantime guess what...I got my rhuemy referral! Finally, i will see the rhuemy August first. What should I expect and what other questions should I be asking at this appointment?

06-20-2011, 06:55 PM
take the time to write a list of your symptoms.
lupus can be controlled with medication.
fibro is harder to controll. the usual treatment is pain meds and something for the swelling.
remember fibro will not kill you, it just makes life uncomfortable.

at the moment my lupus is being wonderfully controlled.
but my fibro still kepps me on the disability pension.

06-21-2011, 08:59 AM
Hi Tocki,

I'm so pleased you've got your referal, mines due also some time in August.

You can't beat reading up about your conditions and Lupus besides as it will educate you into what symptoms you may have and it will make you aware of them, if it happens and steve's suggested the correct things before you go.

Luv Terry xxx

06-21-2011, 10:27 AM
Tocki-welcome to the WHL family!

Linda-you gave some excellent suggestions for anyone with cog fog or slow learners or what-have-you, can benefit from. Thank you for posting your tips. I know that being a teacher, you've learned many tricks of the trade, but being a parent of a special needs child you've mastered some of the things that us with cog fog are finding we need some extra care with. I can't tell you how much I appreciate this, both for myself, but for my BonusDaughter who has some retention problems. Xoxoxo to you!!!!

06-21-2011, 10:35 AM
Steve-excellent post with great links about lupus and fibro. Great name, too! (Eldest son is a Steven and he absolutely ROCKS!).

FWIW, I have posting on a BBerry and the darn rollerball isn't working so I can't "Reply with Quote" or go back and edit my posts......eventually, I go to my desktop and upload pix and make corrections, but I don't catch them all....sorry.

06-24-2011, 08:47 AM
Hi Tocki,

How are you keeping mate plus feeling in general...the quicker your appointment arrives the better i bet you can't wait yourself to see what happens.

Love Terry xxx

06-24-2011, 10:45 PM
Hey Terry! I am hanging in there, trying to manage my pain and you're right, I can't wait for my appointment to get here. Hope all is well with you also :0)

06-24-2011, 11:11 PM
Hi Toki, I am off work for a few days from the fibromyalgia pain and new meds making me too tired to drive. Because of this I have been able to read more posts. I have no advice for you except to keep strong. The Lupus symptoms ha been rough for me but seemed more manageable than the fibro spasms & pain. Steve is right, pain meds are what helplp us to cope. Pain has a way of wearing at you emotionally. I wish you the best at your appointment.

06-25-2011, 02:29 AM
Hey Terry! I am hanging in there, trying to manage my pain and you're right, I can't wait for my appointment to get here. Hope all is well with you also :0)Hi Tocki,
Trying to manage the pain mate is so hard but from one day to the next you never know what place it will be in next.

I'm the same as you endless pain and lastnight my liver went mad with pain...i had strict instructions of my hubby and was drinking water hoping it would help and i've just had the appointment come through about my tumour 23rd August can't wait to get it sorted, the pain pumps just like an heart beat but that's proberly because it's collecting blood the doctor told me.

You takecare mate and enjoy your weekend the best you can and all my love xxx

06-25-2011, 08:45 AM
Sorry that u are going through so much, hope you start feeling a bit better soon. Update us after your appointment in August

06-25-2011, 10:06 AM
Tocki, thanks mate i just take it in my stride it's the pain which gets so annoying at time but i'll do a thread as soon as i've seen the specialist i always do and i'll let you know.

Try and take it easy mate xxx