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Advice please....!! For the last 4 years I've been trying to place a diagnosis to my symptoms: Sporadically I experience very achy hands and forearms accompanied with EXTREME 'knock out' fatigue (which is the worse bit). I don't experience any swelling with these aches. I've been referred to a Neurologist and have had various tests done (all manor of blood tests) and none of them seem that interested in the TERRIBLE fatigue (having been told, on my last visit, to go to bed earlier!!! Soooooooooo upsetting!). I do think my symptoms are exasperated by stress, over-working, general tiredness. But the fatigue I get with my 'aches' is something COMPLETELY different. I can feel 'wiped out' for weeks at a time. Apparently, the doctor and neurologist have ruled out any auto-immune diseases, and they've considered Fibromyalgia but.... here's the thing.... my cousin and auntie have just been diagnosed with Lupus!!!!! Is there a possibility that I may have a mild version of Lupus and I've been misdiagnosed? Is it VERY difficult to diagnose? Do it ALWAYS come with swelling? Please help!!!! :worried:
 

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Hello there and welcome :)

It is indeed very frustrating when fatigue is discounted. I often get blank stares from docs on that score, even those that should know. Fatigue never leaves me, it is part of my disease and my rheumy says that it is very hard to do a lot about - that's fine up to a point BUT there is then another level of fatigue when I'm not doing well which is overwhelming, crushing, heavy and completely stops you from functioning. That is the fatigue that I'd like them to understand but that's hard unless you have experienced it.

Yes, family history can be important but I would say, most importantly that you need to see a GOOD rheumatologist (if you've already seen one then a second opinion). I would want to make sure that ANA blood tests have been asked for (I'd say so as you say auto-immune diseases have been ruled out) and that a rheumatologist asks for a FULL specialised blood panel.

You may have something auto-immune going on but the bloods don't yet show it. Maybe you don't have enough criteria for a diagnosis but an experienced rheumatologist can still tell a lot from clinical symptoms and if you have sufficient symptoms may be able to start you on some treatment even if a formal diagnosis of lupus (or something else) is not possible.

Another thing that can cause overwhelming fatigue is thyroid problems (underactive thyroid) so, if you're thyroid hasn't been checked out, I'd make sure that is done too.

Lupus joint pains are not necessarily accompanied by swelling. I'm not sure if you do actualy have enough symptoms to suspect lupus but it is well worth checking out.

You can see the ACR classification criteria at this link. Take a look and see if anything fits there. Sometimes we have other symptoms that we don't think are linked but that can be.

http://www.thelupussite.com/forum/showthread.php?t=33123

I hope that is of some help,

Katharine
 

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Karennana:

I agree that a second opinion is in order. Alot of time symptoms start long before (if ever) the blood results show autoimmune activity.

Another thing to consider, may be a sleep disorder like apnea. This is something you would not even be aware of and it can disrupt sleep dramatically.

My Rhumy told me I had bad sleep hygien, which really means nothing. I saw a pshychiatrist/sleep Dr and he ordered a sleep study. This showed APNEA, I have a CPAP machine now which stops the Apnea.

Now I won't lie to you, this doesn't really help the fatigue associated with Lupus, however it does help on the good days when the lupus isn't flaring.

It just might be another avenue to explore, while still trying to rule out the autoimmune side of things.

I hope this helps a little - Stephanie
 

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Hi Karen and welcome to the site.

Getting a diagnosis based on blood tests alone can be a long and difficult journey. To answer your question specifically, no, my aches and pains are NOT always associated with swelling.

I also have sleep apnea and agree with Sam that you should have a sleep study done. I had no idea I had problems as we do not hear ourself while we sleep. It was my husband and son that told me to go have the study done. I could not believe what showed up and how many times I stopped breathing in a night...........scary!!!

I was treated by Neurologists for years and told I had MS. NOTHING AUTO IMMUNE SHOWED IN MY BLOOD WORK!!!!!! In my heart I always knew the Neuro was wrong and I kept pressing forward until eventually things did start to show up in the bloods, not to mention issues with skin too.

You know your body best and if you feel like something is wrong then do not give up. Find a good Rheumatologist, one who is experienced with Lupus and press forward. Eventually a clear picture will be painted.

I wish you luck moving forward and please keep us posted as to how you make out moving ahead. Diagnosis can be a tough thing but once there and treated you will feel better. I do think that having Lupus in your family also makes this a more interesting issue.
 

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Pollianna
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Hi Karennena, i think it was Katherine who once said this fatigue we get is like "wading through treacle" You have something going on. keep pestering the doctor. Took me 10 long yrs or so to get treatment but it is worth it xxP
 

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The Other Illinois Tammy
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Karennena,
You have somethings going on that anyone would want answers to, so it is understandable with lupus in your family why you would want to make sure you do not have it. You are right about the fatigue it will lay you out. When the doctor says go to bed earlier you could say well I have went to bed at 5pm and still wake up fatigued how much earlier would you think I need to go to bed? I am sorry I just think it is funny they did not ask what it felt like. It took me telling my rhuemy that it felt like I walked around all day with 50 lb. weights on me all day long and it is only like 10 am. He finally got the message that it is just not being sleepy it is body fatigue also. It might be that they think you are just talking about being tired and they need a visiual to help them see what fatigue you are talking about. If they don't want to help you find a doctor that will. I do hope this has helped you and you start to feel better soon.
 

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Just to add on a few points of interest to you:

(1) Lupus joint pain frequently occurs WITHOUT any swelling. It's common, and my rheumatologists when teaching new residents have told them in front of me that "the pain doesn't match with the swelling - especially as compared to a rheumatoid arthritis patient". In other words, severe pain without swelling is fairly common with lupus

(2) Lupus can be difficult to diagnose, especially when a person is ANA negative. In some people, it appears to take a long time for the ANA to become positive, and in a minority of cases the ANA will never be found to be positive (but they are diagnosed through other methods such as skin or kidney biopsy combined with physical signs and symptoms and other blood test results).

(3) That kind of fatigue is terrible and very difficult to get others to comprehend who haven't felt it! It is nearly impossible to treat too it seems.

Good luck to you... I think that it would be in your best interest to get copies of the blood work that has been run in the past so you will know what was and wasn't tested - and what the results were.
 
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