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View Full Version : Hi I am frustrated and not sure what is going on.



Lizza
11-29-2008, 11:37 AM
Ok well, I am a 24 year old mother of a two year old little boy. I have had swelling in my joints since around age 13, a rash that comes and goes and itches which covers only my chest, stomach and arms (especially bad after being in sun or tanning), one lymph node removed around age 12 and one that still to this day changes sizes and causes headaches and hurts to the touch (I was told as long as it bothers me it isn't anything serious -??), have struggled with bouts of fatigue and been tested several times through the years for "the kissing disease" (I am totally having a brain fart and can't think of the name) which has always been negative. So here's where it gets interesting... I began using heroin at age 15 and just got put on Suboxone in May of this year, the Dr. I had been seeing for my addiction was also my PCP. I told him about all the pain I have been having (some days I can't even drive because my hands cramp up and swell so bad). So he put me on a series of NSAIDS, none of which helped. He also sent me for some blood tests which included an ANA. The ANA came back positive at 1:32 homogenous, I had two different blood count test which were irregular (LYM & SEG) one was high and one was low although I don't have my paperwork in front of me so I don't know which was what. Then my husband got a new job so we moved to OH. I had to start all over with a new addiction Dr. and go from there to get into a new Rhematologist. So I finally got a new PCP and he just kept telling me that I don't have RA which had previously ruled out. he then sent me to a pain specialist and a Rhematologist. So me being honest (and stupid) told them about my addiction and in turn they told me there was nothing they could do for me. I am pretty sure they thought I was trying to get drugs (PLEAE, why would I tell them I was an addict if that was the case?!!). The Rhematologist told me that a 1:32 homogenous doesn't make any sense, although everything I have researched on it tells me that is a common ratio for SLE. I am just so frustrated and don't know what to do or who to see next. I can't deal with the pain, every night I have to lay however my wrists are ok, I wake up from pain if my pillow touches my hands, each morning I can't walk for around 40 mins. because the top of my foot swells and can't have any pressure on it. So that's a little about me any ideas anyone has would be great. Thanks in advance

KathyW1958
11-29-2008, 12:35 PM
Hi Lizza,
Welcome to the site. I think that it does sound like you may have Lupus. I think that you need to see a different Rheumatologist if that is possible. Did you mean that your ANA is 1:320 as that is a positive ANA result. The stiffness and soreness in your joints sounds as though it could be Lupus also. Have they done a kidney test on you for the swelling in your feet? It also sounds like you are very sun sensitive and that would go along with Lupus too. I don't know that much about the addiction, but I don't think that that would cause these symptoms. I seriously think you need to see a different Rheumatologist. I hope that you keep posting. There are others that will come in here to greet you as well and they may have information for you.

Hugs,
Kathy

sits_inthe_corner
11-29-2008, 01:53 PM
Gentle hugs to ya Lizza,

Welcome to the site :)

You were quite right to be honest with doctor's about your addiction history. Now you need to find a doctor with two clues to rub together who will work with you to get to the bottom of the pain issues.

Go back to your family doctor. Let them know what happened at your last appointment and how frustrated you are.

Tell them you need to see someone who is going work "with" you on your pain issues and who can be sensative to drug addiction issues as well.

There are treatments out there that do not involve drugs that may cause you problems with addiction.

Plaquenil being one of them. But they need to get to the source of your pain. It can take a while to figure it out.

I am in my third year of trying to figure this all out. So far the only doctor on my side is my family doctor.

NSAIDS do not work for every one. I did not respond well to them.

I am currently on a combination of Arthrotec75 and plaquenil. So far so good. As I mentioned, I still do not have a diagnosis. Eventhough lupus and rheumatoid run in my family and I have have alot of the rashes and sensativities plus a couple of possitive ANA tests.

Ask about a referal to physical therapy and about wrap around wrist supports.

My feet , legs and knees swell badly. I wear diabetic compression socks when I first get up and a wrap around soft knee brace when I am working around the house or the yard or driving my car.

Please feel free to ask what every you like, and we welcome whining and venting because we understand ... we're all in the same boat. :)

Lizza
11-30-2008, 10:26 AM
thank you all. And about my ANA the result simply said the test was positive at 1:40 and my "score" is 1:32. No zero at the end. I am just so tired of feeling this way. My husband just tells me I am whining if I say anything about my pain. I mean it is obvious that something isn't right when my hands which are normally tiny are three times there normal size. I still take care of everything I need to during a day, it just takes a little longer and hurts a lot, I don't know what he thinks I get out of saying I am in constant pain. It makes me so angry. I want to start online courses but there is no way at this point I could type for long periods. This small paragraph is taking forever! I appreciate all your remarks and I am trying to find a new Rhematologist. I see my addiction Dr. tomorrow so I am going to say something to him about my pain because this is getting old and I can't deal with it anymore. When I used I had pain but it was not nearly as bad, it was tolerable. NOT NOW! Thanks for letting me vent, I do appreciate it

Lizza
11-30-2008, 10:31 AM
OH YEAH... and my Rhematologist told me that because I don't get the butterfly rash on my face it can't be Lupus.. everything I read said that was not true. Anyone know anything more on that? I do get a bad itchy rash on my torso and arms but NEVER face, back or legs. Thanks in advance

KathyW1958
11-30-2008, 11:28 AM
Hi Lizza,
I think that that Rheumatologist that told you that you could not have Lupus, because you do not present with a Butterfly Rash is full of crap big time. I know for years I did not have The butterfly or Malar rash and when it did appear I was at my sickest and darn near died. When the Lupus started attacking my heart muscle and my lungs is when the malar rash appeared. There are several folks that comes in here that have never had the malar rash on their faces. Rob one of our moderators has never had this rash on his face and he has severe lupus. I definitely do think that you need to get a different Rheumatologist, because that one you saw sounds like a real idiot with a capital I.

Hugs,
Kathy

sits_inthe_corner
11-30-2008, 02:03 PM
Gentle hugs to ya Lizza

I agree with kathy, that rheumy is full of crap. I do have the blessed almight fricken butterfly rash, what I dont have is a stupid diagnosis.

I've had the rash since I was 18 or 19 yrs old. Sigh any way... I hear ya on the pain thing.

Every once in awhile hubby's knees will start to hurt him....ha....and pfft. At least for him the pain will be gone by the next day.

When we go out grocery shopping I get him to grab the stuff that's on the lower shelves, cause it hurts too much for me to get it. Well he was sore today and I could tell he was hurting.

So I asked him if he wanted to take turns getting stuff. He said he didn't want to mention it cause he was thinking "this is what it's like for her every single day"

Finally .... he get's it. :)

Don't think it really changes anything though. I don't get out of doing house work :D

But it's nice to have it acknowledge that it takes a huge effort and tole on me to do half of what I used to do.

Lizza
11-30-2008, 07:57 PM
Also just another quick question... when my PCP sent me to a pain specialist (who kicked me out after telling him about my addiction issues) he sent me for a $600 bone scan. Does this make any sense because I feel that he was just trying to get me out of his office but make me feel like he was doing something for me. He even said and I quote "I'm sure it will be normal but if you want we can make another appointment to go over the results". It did end up being normal but after I asked the technician that was doing it what it was for exactly he said it just showed new bone growth due to damage. Why would they even bother having the test done? If anyone has any insight I'd appreciate it. Thanks

Lizza
11-30-2008, 08:09 PM
Oh yeah the pain Dr. did say that my bones creak way too much for a 23 (at the time) year old woman. I just remembered that when I stood up. LOL

KathyW1958
12-01-2008, 08:50 AM
Hi Lizza,
I hear where you are comming from. It sounds like you need to find a different set of doctors big time. I had serious problems with the doctors for years and years. I would go to the doctors repeatedly only to be told that I was stressing and worrying needlessly and boy they would treat me like I was a hypochondriac. I even went so far as to see a Psychiatrist. I finally got a case of the Chickenpox at the age of 35 and that is when my health went right down hill on a slippery slope big time. I finally got a doctor to listen to me and test me for all the tests that he could think of for Lupus. It was a sad situation, because this doctor was right out of med school and just setting up his business, but shoot none of the other doctors in this stupid little hick town were taking any new patients. I am so greatful to this man for taking me as a patient and diagnosing the Lupus. He made it clear though that he did not want to be my doctor after diagnosing me, because he was scared and did not feel comfortable about treating anyone with Lupus. He sent me right to the Rheumatologist that I now see as both my Rheumatologist and Primary Care doctor. These two doctors basically saved my life for me. I sure hope that you can find some good doctors and quickly. I will be praying for you.

Hugs,
Kathy

purple_butterfly
12-01-2008, 07:25 PM
Welcome Lizza;
Think you were absolutely right in being honest with your doctor about your addiction. Even those of us without that addiction are looked at like we are drug seeking, so please do not think it is only you.
I am also from Ohio. Where are you at? I am between Cleveland and Akron. Isn't this snow wonderful for your pain. loll.
I have been keeping a diary of bad days. I write down the weather, my activity, my diet, work schedule, stress factors, if it is that time of the month....I have been trying to find reason for days the pain is worse than others and have found no correlation. The weather does not help. There are days I feel like every bone in my body is going to shatter with every move I make. They have become more frequent along with my legs not wanting to move and my arms and hands being numb. The swelling in my extremities is awful. It is 3+ pitting and when you push on my bones, the tissue stayes pressed in for a long time.
If you are close to Medina, I can give you the name of a rheumatologist that is very sympathetic. She is lost when it comes to me, but she certainly has a great bedside manner and is willing to take time and listen.

Good luck in your search.
Kim

Lizza
12-03-2008, 08:27 AM
Thanks for all your replies! I am in Lexington (near Mansfield) Ohio. Yeah, the snow is GREAT *sarcasm*. My right arm has been going numb up into my neck! My hand and feet turn completely white and loose feeling - I love it. Medina is around an hour from me. I saw my addiction Dr. on Monday and he said I need to go have some other blood work done. I have an order for lab work and I am wondering if any of you can think of any other tests I need. There are only three on this sheet... CBC w/diff ... ANA titer ... ENA Battery. I thought I read that there were other needed tests and I would rather have them all done at once if possible. So anything y'all can add would be great. Oh and my addiction Dr. also put me on Ultram along with motrin. I was taking around 5,000mg of Tylenol per day and 3,200mg of Ibprophren and he said I was overdosing. The Ultram helps a little bit although my hands are still three times the normal size. It makes it easier to go about my day without just thinking of pain.

Lizza
12-03-2008, 08:31 AM
HEY... I was first tested for Reynauds (b/c of my hands & feet turning white and loosing feeling) and that was negative which is when they found my positive ANA, what else could possibly be causing that? The Rheumy I saw here told me I definetly have it even though I tested negative. Also he said the only thing that could be done it blood pressure meds. and my blood pressure is always around 110/60 so i can't lower it anymore. Besides heavy gloves and socks (which don't really cut it anyway) what else can be done??

Saysusie
12-04-2008, 08:28 PM
Here is some information I found on the management and treatment of Raynaud's. Perhaps there is something in this article that you can find helpful to you.

Management and treatment

Treatment

Most people with primary Raynaud's phenomenon don't require medical treatment, although many choose to take medication during the winter months. People with secondary Raynaud's phenomenon are at risk for fingertip ulcers and tend to have active symptoms all year long.

The goal of treatment of Raynaud's phenomenon is to prevent episodes and, in secondary Raynaud's phenomenon, to prevent tissue damage. This can be done by protecting the body from cold and avoiding aggravating factors, such as excessive emotional stress, smoking, certain medications like nonselective beta-blockers, use of industrial tools with violent vibration, and use of narcotics. In some cases, a doctor may prescribe medication.

Self-management

A person with Raynaud's phenomenon can treat or manage their own condition by protecting the body from excessive cold, and by protecting the skin.

Cold protection

To avoid episodes a Raynaud's phenomenon, the entire body should be warm at all times. Follow these tips to avoid getting too cold:
Dress warmly in layers of loose-fitting clothes, especially during cold weather and during changes of season.
Wear a hat in cold weather, because body heat is lost through the scalp. Cover your face and ears with a scarf.
Wear loose-fitting boots and shoes that won't cut off the blood circulation.
Wear heavy socks or layers of socks.
Wear mittens -- they are warmer than gloves.
Always keep a sweater or jacket nearby, even during the summer. It may be cold enough to need it in air-conditioned buildings.
Use flannel sheets or layers of blankets. Use an electric blanket to warm the sheets before getting into bed. If your hands and feet get cold while sleeping, wear mittens and socks to bed.
Keep the rooms used most often at a comfortable temperature.
Start running the bath or shower water well before bathing so you don't touch the cold water. Keep the bathroom door closed so steam will warm the room.
Ask family and friends to help. For example, let someone else get the newspaper from outside or start the car on a cold day. Avoid household tasks that require putting hands in cold water.
Wear gloves or mittens to reach into the freezer.
Use insulated containers, gloves, or napkins to hold cold drinks or food.
Rinse and peel vegetables with warm water.
Use chemical heat packs to supplement mittens and warm clothing.

Skin protection

Poor blood flow may make skin dry. It may also cause cuts, cracks, or sores to heal more slowly than usual. These tips can help protect skin:
Use lotion with lanolin on hands and feet every day to keep the skin from chapping or cracking.
Wash with a mild, creamy soap. Clean between fingers and toes, but don't soak them.
Examine feet and hands daily to check for ulcers. If a ulcer develops, keep it clean and covered. See a doctor right away.
Protect fingernails and toenails. Use a lotion to keep the cuticles soft. Don't cut the cuticles with scissors or use sharp instruments to push them back. Instead, gently push them back with a cotton swab soaked in cuticle remover. Carefully cut hangnails and file your nails in a rounded fashion to the tips of your fingers.
Wear rubber gloves while washing dishes.
Take care when doing activities that put pressure on the fingertips, such as using a manual typewriter or playing the guitar or piano. This kind of pressure may cause your blood vessels to narrow, thus triggering an episode.
Wear clothes made of natural fibers, such as cotton and wool. These draw moisture away from the skin.

Other tips
Don't smoke. Chronic smoking causes blood to narrow. Medications to treat Raynaud's may not be as effective in smokers.
Try to avoid emotional stress. Ask a doctor about relaxation techniques and other stress reduction methods.
Because certain drugs may cause blood vessels to narrow, all the doctors that work with a person with Raynaud's phenomenon should be told about the condition, and medications should be discussed. Working in partnership with a doctor may help determine which drugs and treatment are most suitable for each person.
A warmer climate will not cure Raynaud's phenomenon, but it may cut down on the occurrence of episodes and reduce the risk of developing ulcers on fingers. If you consider moving to a warmer climate, you'll need to decide if the benefits outweigh the expenses and complications of relocating.
Look into biofeedback training. It may help control Raynaud's phenomenon. Biofeedback may also help reduce pain and promote relaxation. A doctor should be able to discuss if it would be helpful and where to find training.

Handling an episode

If an episode a Raynaud's phenomenon occurs, stay calm and get your whole body warm by going indoors or by putting on warm clothing. Then follow these steps:
Gently warm the fingers and toes as soon as possible. Placing hands under the armpits often helps.
Wiggle the fingers and toes. Move or walk around to help blood flow freely.
When hands start to feel cold, held them above the head. They swing them around as in throwing a softball.
Run warm--not hot--water over the fingers or toes until normal skin color returns. Do not use a hot water bottle or heating pad, which may damage the skin.

Exercise and therapy
Exercise may have some benefit to people with Raynaud's phenomenon. A doctor may be able to advise if an aerobic exercise program would be helpful.

Medications

No drugs are specifically approved by them U.S. Food and Drug Administration for treatment of Raynaud's. However, many drugs used to treat high blood pressure or angina pectoris have been shown effective and safe in treating Raynaud's phenomenon. These include calcium channel blockers such as nifedipine, amlodipine, isradipine, and others.

Some of these medications may have side effects, such as headache, palpitations, lightheadedness or dizziness, or fluid retention. Contact a doctor if questions arise about side effects from medications or questions about their use.

Surgery
In rare cases, a doctor may recommend sympathectomy to treat Raynaud's phenomenon. This operation involves cutting the nerves that may be making the narrowing of the blood vessels worse. The procedure is done mainly for secondary Raynaud's phenomenon and usually is not necessary.

Peace and Blessings
Saysusie

Lizza
12-07-2008, 08:37 AM
Thanks saysusie! I will definitely try some more of those things. I already layer up really well but there are a lot of helpful tips for me in there. I appreciate it very much. Thanks again and take care

Saysusie
12-07-2008, 08:05 PM
You are very welcome. I, too, suffer from Raynaud's and I found some of these suggestions helpful to me! :lol:

Peace and Blessings
Saysusie

Danica01
12-10-2008, 05:05 PM
Thank you for being so honest with us about your past! You are very brave and I am so sorry you are going through all of this. It is very frustrating when you feel so yucky and yet your lab work does not lead to any answers. Hang in there and know that we are all here for you! I am also new and have found so much love and support here, it sure makes what we are going through a little less lonely :wink:

Lizza
12-12-2008, 02:38 PM
I appreciate all your answers and support already! I am very glad to have stumbled upon this site!! Thanks again

Saysusie
12-15-2008, 04:49 PM
We are happy that you are here also. This is a great group filled with the most caring and supportive people and you are a very welcome member of our group :lol:

Peace and Blessings
Saysusie