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TammyR
07-07-2008, 03:56 PM
I have not been here in awhile but decided to come back for some support. I still have no blood tests showing Lupus. I still have fevers and sun sensitivity. I hurt all over and all I am being given is pain meds. The surgeon who removed my gallbladder wanted me off the immune system suppressants. The Internist doesn't want me on steroids due to my weight. The Rheumy won't diagnose me with Lupus because of normal blood tests but the Internist says it is the only thing that it can be because of symptoms, but only treat my symtoms. The Rheumy says Fibro but the symtoms don't match. When asked about the fevers, his response was no biggy. Some people just have them. He had me on Lyrica. It did nothing. I am tired of hurting. Tired of pain meds. Tired of being depressed and yes I just had my anti-depressant highered. Today I had an endoscopy. I have Barrett's esophagus and GERD that got worse after the GB removal. I still have pain in the GB area too. I am tired of being in the bed. I hate this! Do we all feel so bad or is there something someone can suggest to me that I have not tried? Does anyone on this board live near North FL who can suggest a doctor? Sorry for the long boring post, but I am having one of those weeks!

KathyW1958
07-07-2008, 05:58 PM
Hi Tammy,
I sent you a pm. Welcome back to the site. I know how it feels to get jerked about by doctors. PM me ok.

Hugs,
Kathy

TammyR
07-07-2008, 07:48 PM
Thanks Kathy. I read your PM and replied. I appreciate the help and support. Today is just one of those days when I am feeling sorry for myself! LOL

Saysusie
07-08-2008, 10:20 AM
Tammy;
I am so sorry that you are having so many issues with no real answers and doctors who seem to not want to work together or work with you. The fever is definitely one of the 11 criteria for Lupus, so in that respect, it IS a biggie!
In order to have a Lupus diagnosis, you must meet at least four of the eleven criteria. From the symptoms that you've described, it sounds as if you do meet at least four. Perhaps you can print out the criteria, take them with you to your next doctor's appointment along with a list of your symptoms. It is possible to have symptoms of Lupus with some negative lab results. With the variety of ways that it presents itself, lupus is difficult to diagnose and it can be overlooked, often for years, unless the doctor or consultant is alert to its possibility. I think that, for most of us, it is important to keep a symptom log or journal as regularly as possible to help in diagnosing and understanding the course of the disease and how it affects us.
You say that all of your lab tests were negative. I wonder which ones they ran? Basic lab tests should include a CBC with differential, blood chemistries/analyses (SMAC), ESR and urinalysis. Abnormal CBC results may include thrombocytopenia, leukopenia or lymphocytopenia, and/or anemia. It's not uncommon for there to be long-standing, slightly-low WBC's and RBC's. While a single such result might be dismissed as insignificant to the examining doctor, long-standing results like these are significant. Therefore, you should get results of ALL of your lab tests, it is helpful to make a graph of these lab results. Doing this can be a very important tool to aid in a diagnosis.
There may also be an elevated ESR or C-reactive protein which merely indicates that an inflammatory process does exist. Finally, blood chemistries and a urinalysis are important to check for major organ involvement (such as kidney, liver and the thyroid gland). Signs of kidney involvement would include an elevated BUN and creatinine, or the presence of protein in the urine. Blood chemistries which evaluate liver function include AST, ALT, bilirubin, alk. phos. and GGT. Thyroid studies include the T3, T4, Free T4 and TSH.
Lab tests for specific antibodies should also be performed. Most doctors will only run an ANA to start with, then if that comes back positive and symptoms of lupus are present, they will make a referral to a rheumatologist. However, a negative ANA does not and should not preclude a referral to a rheumatologist, especially if, like you say, your symptoms persist.
The following are some of the standard tests which most rheumatologists should run when lupus is suspected. These include:
1) The ANA (antinuclear antibodies) which are considered the cornerstone of lupus diagnosis as they are present at some point in 95-98% of patients with lupus. However, it is possible to have ANA-Negative Lupus!
2) The anti-dsDNA found in 50% of patients with lupus. Anti-dsDNA is so rarely present in patients without SLE that its presence is generally considered diagnostic for SLE.
3) Anti-Ro (SSA) which is commonly found in cases of ANA-negative lupus and may indicate secondary Sjogren's Syndrome, and anti-La(SSB) which occurs mainly with primary Sjögren's Syndrome.
4) Anti-Sm which is seen in few lupus patients, but when present can help confirm the diagnosis.
5) The anti-RNP which may indicate mixed connective tissue disease (MCTD) at high levels, or confirm a lupus diagnosis at low levels.
6) Anticardiolipins and the lupus anticoagulant. Since 1/3 of SLE patients test positive for one or all anticardiolipins (IgA, IgG, IgM) and APS is so common among lupus patients, rheumatologists will often run these tests.
Rheumatoid Factor (RF) which is positive in 80% of those with RA, but only 20-30% of those with lupus. A high RF titre may suggest an RA diagnosis rather than SLE.
7) Immune complexes or complements (C3, C4, CH50) which tend to be low when lupus is very active, and can also be an important gauge of disease severity.

Other important lab tests include CPK, PT and PTT. CPK tends to be elevated when there is muscle inflammation as is common with lupus myositis. Also, the PT and PTT tend to be prolonged in those who are positive for the lupus anticoagulant.
When looking at the above test results, it's important to consider them in context with other test results and symptoms. This means borderline and low-positive results may have more significance than they otherwise would. Also, it's important to track trends over a period of time and note whether the results are abnormal but stable, or fluctuating widely. Further, if there is fluctuation, keeping a symptom log may help pinpoint what caused it.
Now, you have a right to ask your doctor to run these tests (if they have not been done) and you have a right to see the results of these tests. Bear in mind that you may be responsible for the costs to run these tests, so you will have to make a decision regarding their importance to you.
If you establish a pro-active and cooperative relationship with your doctor, you may not need to change. You may just need to become more assertive, knowledgeable and involved and insist that your doctor do certain things and that you are given the results of your tests.
Let us know how it goes.

Peace and Blessings
Saysusie

TammyR
07-08-2008, 02:00 PM
Hi Saysusie. I know they checked many of those you listed but I am sure not all of them. My routine tests always include sed rate, which was high once but is now back within normal range. I know they do the CBC, thyroid, liver, lipid panel, glucose, have done PTT, checked for RA, and ANA. I was only told my immune system tested low for my age and I had red cells in my urine but that has not been retested. One of the docs said it was because I had kidney stones. Recently I developed high numbers for cholesterol. I have always had an high ASO titre so my heart was checked by a cardiologist for pericarditis. It seems when I go in something else pops up. 1st the gallstones so I was told lets get past that. Then the next 2 times I went in I was sick. Once with a cold the second with strep. Then I tore my ligamnet in my calf just by walking down 3-4 stairs. The list goes on! I have decided to call my insurance company to see about a 2nd opinion for a Rheumy and move up my next appointment with my Internist, who is now my primary care doctor. I am also checking with insurance about the Mayo clinic. My Internist has a younger more aggressive associate, and although I love my Internist, I'd can see her and get her opinion without going elsewhere. I appreciate knowing I can come here to vent, because it helps. It also helps to know how difficult a diagnois can be and the fevers make me know I am NOT too crazy! Thank-you!

Oluwa
07-08-2008, 04:07 PM
TammyR...

I read your frustration and depression all over your post..head hug, gurl...

Maybe they need to find a better drug regime. When I was on Lyrica it was combined with Mobic, Flexeril, Elavil and Lortab regime for FMS recent diagnose. I stopped them without consultation. For me, I am sensitive to behavioral changes as a side effect, that I why I discontinued. They made me irritable and depressed.

Are you on any NSAIDs? They are very hard on our tummies, especially those of us with GERD...Yep, I have GERDIE too. Two months ago I had a esophagus dilation.

Also a lot of the anti-inflammatories can cause weight gain too...are you on any of those as well. Some, anti-depressants cause weight gain ? Cymbalta isn't suppose to contribute to weight gain, there are others out there...check 'em out...

Maybe you are like me, weight gain as a side effect is sure to happen to me...

I found swimming helps tremendously with my pain. Also frequent shower, the water helps me too....Since swimming I rarely dose with pain relievers for my IT or FMS symptoms, but as of late I have been experiencing spine pain. I've had three spine surgeries...currently attending PT for the post cervical spine dilemma I seemed to be having. Unstable spine.

I believe we need to exercise to help alleviate some of our pain. It helps to build core muscles to sustain, hold the others...do you stretch?

Fevers are a sign of an infection...pain is a warning to alert you something is wrong. Your doctors anger me...I can imagine then how you feel...g-g-g-gg-ggr-r-r-r.

Have you tried heat or cold therapy on your pain spots?

How are you daily eats...eating fresh, lowfat? High fat diet creates inflammation in the body..inflammation leads to pain...

Without a dignose are you following a recommended IT diet regime? Avoid sugar, sugar subsitutes?

I supplement with Fish Oil...2400mg, CoQ10 400mg and also B-Complex...

There are books on how to eat and ant-inflammatory diet. the Omega Diet and The Anti-Inflammatory Diet. Though not a "diet" per se, but you can lose weight, but it is great for the management of IT, I believe.

Have you check out the books by Daniel J. Wallace...All About Fibromyalgia and The Lupus Book 3rd Edition? Oodles of info...

I hope this helps..helping you to find a way to manage your symptoms without a diagnose...

I feel for you Tammy, head hugs...I know it is hard not to stress about your health when you are trying to find what is wrong..but do try...Mediate, stretch, breathe deep....

Hugs..
Oluwa

TammyR
07-08-2008, 08:10 PM
Hi Oluwa. Funny you mentioned swimming. My doc said I need to exercise and my question was how? I can't even walk far because my back and hips hurt so badly. I told my hubby I wanted to look into swimming because I had heard it was easy on the joints. We have decided to do some repairs on our home and sell it and look for a new home with a pool. In the mean time my friend who is a PT suggested PT via pool therapy. Too bad she lives in PA and I am in FL.

I am trying to eat better especially since I have the new cholesterol issue. I bought fish oil but have not taken it yet. Right now I am being treated with pain meds only. I was on Imuran but the surgeon who removed my gallbladder wanted me off before I had the surgery and my current doc never put me back on it. I do take Lexapro which is bad for weight and he just increased it. My doc tried switching me to welbutrin but I went nuts on that. I wanted to kill someone!

I think it is good advice on the book. I am going to get me one pronto. Thank-you!

Saysusie
07-09-2008, 10:46 AM
Hi;
Just a quick note on your cholesterol levels. Have your doctors checked your Thyroid? Thyroid issues can cause elevated cholesterol levels. Those tests would be theT3, T4, Free T4 and TSH tests that I mentioned in my earlier post. Also, Lupus can cause thyroid issues, so it is not uncommon for those of us with Lupus to have either hyperthyroidism or hypothyroidism. So, here again, is another sign or symptoms that fits into the Lupus criteria.
Remember, you are never alone....you ARE NOT crazy....and we are here for you.

Peace and Blessings
Saysusie

luvwine2007
07-09-2008, 03:26 PM
Swimming is a great option! I used to be a runner and I tried running again for a while, but found my joint pain was worse. :( :( I've been swimming about 4 days a week for the past month and I've notice a big improvement in my joint pain! Not to mention it is a great calorie burner, and works all your muscles. Luckily my community has a lap pool, so I just walk down the block to the pool. Hope you find a home with a pool, or can use a community pool!

Good luck!

TammyR
07-09-2008, 03:27 PM
Yes, I just had my thyroid checked. It gets checked regularly because my mom had a goiter and my weight is so high right now! Thanks saysusie! You, Kathy and Oluwa have helped me so much and gave me some new ideas!

TammyR
07-09-2008, 03:32 PM
Thanks luvwine! I'll get my hubby talked into it. I wish he wasn't such a procrastinator and could get this place fixed up fast! I live in the boonies on 10 acres. The closest pool for any rehab is 30-40 minutes from me. I am going to talk to my doctor and see if I can do some PT there. Unfortunately I found out today I HAVE to get referrals even for a second opinion or I have to pay. I must go in network or pay the 1st $300 and then 50% of each bill after that. I can't do that since I can't work. Anyone know if SS would help someone like me with no defintive diagnosis??

laurid8967
07-09-2008, 03:53 PM
Hi Tammy -
My name is Lauri and I am someone with SLE who also has a negative ANA. It has been 8 years of insanity being undiagnosed or misdiagnosed, and I was finally officially Dxd last month. All my blood work is not normal however. My sed rate is always high, as well as my CRP. My C3 and C4 are low, red blood cells always low and lymphocytes low. As Saysusie said, however, individually these reports dont jump out at a doctor, but over time, they tell a different story.
I have never had a weight issue or cholesterol problems, but have suffered for years with joint and muscle pain, swelling, fevers, sores in mouth and nose, hair loss, miscarriges, pluerisy, and fatigue that has left me in bed for months at a time. Unfortunately, I applied for disability when I did not have an official Dx, and without a doctor saying you have SOMETHING, and be willing to back it up with a formal letter, etc., your chances are very slim. Even those WITH diagnosis have trouble getting disability. It is unfortunate, but true. I also suffer from seizures, and I was still denied twice. I would be really honest with your doctor, and ask him if he can try you on a dose of Prednisone. Chances are, if it is lupus (or any other autoimmune disorder) you will feel better. A couple week taper of prednisone isnt too bad at all, and certainly worth a try.
For me, after years of meeting most ALL the 11 criteria of lupus, and the disease progressing, my GP and subsequent rheumie both agreed it was "seronregative" lupus. It is very rare, but it DOES exist. I was put on 20mg prednisone and 400mg of Plaquenil, and felt better within DAYS...It is now week 7, and I feel even BETTER. I have never been more grateful in my life than to have finally been believed and treated for this pain in the "neck" condition!
So, hang in there - for now, I would forget about disability, and concentrate on getting treated. Take care of your body, eat WELL (I cant BELIEVE what a differece this has made), get adequate rest, and avoid the sun. Try to start living in moderation - its hard, but worth it. Be persistant with those doctors!! Dont let up!! I hope you do not have to go through what many of us here have had to go through to get the proper dx and treatment. Keep posting!!
Love Lauri

TammyR
07-09-2008, 07:33 PM
Great advice Lauri! I'll try some of your suggestions as well. Do ya'll get a lot of headaches? Geez, I am sick of those! I am actually looking forward to having it out with my doctor. I am going to ask for a firm diagnosis instead of "I think you have Lupus" and demand he try meds to treat my condition, not just pain meds for symptoms. If he won't do it, I'll see his associate. My doctor is a sweety, just not agressive and he is older and he says it has to be Lupus but always put myalgia as a DX. My Mom wants to go with me. She is VERY aggressive. I am just too tired to argue with them! LOL