OT: Swollen Fingers, Not Arthritis?

Hello folks,

I have had chronic pain for many years, along with fatigue, etc. etc. for 20+ years. I have been told I have fybromyalgia by quite a few doctors, including two rheumatologists in the past year. I also have other mechanical pain - cervical stenosis, a tear in my shoulder socket (SLAP tear), etc. Plus OSA and CompSA.

Both rheumatologists told me that I don't have arthritis. That is, I don't have "nodules" on my finder joints charisteristic of rheumatoid arthritsis, there are no blood markers on blood tests, they said I don't have inflamation, etc. I was positive on 18 of 18 pressure points for fibro.

But I do have swollen, painful joints sometimes. My feet hurt, my hands hurt, etc. This morning, for example, the middle finger on my left hand is visably swollen and the joint and finger is painful. It is hard to bend the finger, almost like a sprain. I get the same kind of pain and swelling if I try to do anything like shovel snow or use my hands/arms.

I have had this for years, going back at least to 1993 that I remember. I would often wake up in the morning and my fingers would be swollen, I couldn't get my ring on, etc.

I asked the pharmacist about this while I was there today. He could see the swelling.. He said it obviously is swollen and is inflamation of some sort, although it apparently does not show up in blood tests. He suggested Lupus as one possiblility, although I don't seem to have some of those symptoms when I read about it - rashes, etc.

On a blood test from last fall, the only values that are a bit high or low from a large set of tests are:

* CRP - .6 (high end of scale)

* Urea Nitrogen - 23 (high)

*IGm - 49 (slightly low)

* Triglycerides - 194 (high)

I have been down trisi road many times in te epast 20 years, looking at possible causes. I have sleep disturbances, exercise intolerance - pain while walking, achy the next day, even though I used to love sports, etc.

I don't really expect an answer I guess, and I'll talk to my rheumatologist when I see him in July. I'm just wondering if there is something here that I don't "get", or should look at, that makes sense to others? Partly because the medications are different for inflammatory vs. non-inflammatory pain, etc. and I am not really on anti-inflammatories right now. (Just took some naproxen again today, I took it for about 1 year before taking a break a few weeks ago. I was on Celebrex a few years ago, etc.)

Thanks!

Best,
Michael

I don't know what I can say that might give you some ideas.

I was diagnosed with Rhueumatoid Arthritis about 20 years ago. It started in my right hand - one finger really. One night it was swollen and painful when I touched the arm of an upholtered chair. I didn't know what was going on but went to see my GP. She said I either had an infection or Rheumatoid Arthritis. I couldn't believe that I might have RA! She did some blood work and put me on a non-steroidal anti inflammatory.

Within a few weeks I hurt everywhere. The blood work was not very helpful at that time. She referred me to a Rheumatologist and it took her 6 months to give me a firm diagnosis. She did put me on RA meds right away though - the anti inflammatory and a disease modifying drug that slows the progress of the conditions and helps prevent deformaties. It was then beginning to show in blood work. Blood work is very misleading for people with RA. Sometimes it does not show. You can't depend on just blood work. X rays and joint examinations must be done to assess and to follow the progress of the condition, if blood work is mostly negative for RA. I am assuming you had a "sed rate" blood test. It is a good marker for diagnosing RA. High means the RA is very active. Mine is very low,except when I am not well controlled ( in a flare).

Funny thing is that my hands are now never involved unless I am in a flare. Once I was in the ER for something else and the doctor there said he could not believe that I had RA because my hands were so good. My Rheumatologist said that he should see my big joints - knees shoulders and ankles. They are bad for me and that seems to be where I have the RA. During a flare, those joints get way worse and the hands and feet then get swollen and inflammed as well. I have no nodules on my hands and never have had.

RA is a strange disease and not easily daignosed, according to my Rheumatologist. I trust her a lot because she has kept me going for 20 years.

I have an good exercise program but it is modified for my arthritis. I have to be very diligent about doing it to keep the joints working as best I can. I also take the drugs still.

I hope you can find an answer when you see your Rheumatologist in July. You speak of having all the trigger points for Fibromyalgia so that may be your problem.

Hello Michael,

I really wanted to respond to your post. I don't know if what I have to offer will be helpful or not, but I can relate to much of your post so I wanted to share my own experience. I have had the pain and the swelling, often in my hands, also knees and elsewhere, off and on for many years and have had the blood tests over and over only to have them come back negative.
A couple of years ago, after doing some research on my own, I asked my doctor about degenerative arthritis and he ordered xrays (the only way to diagnose degenerative arthritis) and there was my answer. There seems to be some disagreement about whether or not this type of arthritis can cause fatigue. Some say yes, others no.
You may have had xrays, this may be of no help to you at all, but I just wanted to share just in case.
As for treatment, there basically is none. I do take OTC anti-inflammatories when I have to have them as it is very much a remit-relapse experience for me.
Best of luck to you and I know I may have wasted your time, but I wanted to share this.

Jeanette

I'm wondering if they've ruled out gout? It CAN occur in your fingers as well as toes and it comes and goes. It's often coupled with osteoarthritis when fingers are involved.

You don't have to wait until your rhuematology appointment--you can ask your primary care physician about it.

If you ever have a "hot joint" one that is very, very painful, swollen, and warm to the touch, you should call your doctor--there can be bone and joint infections that may need immediate treatment.

But it could also be tendonitis, carpal tunnel syndrome, a bunch of other things, so please don't depend on us to guess at it - see your MD.

Thanks all! I didn't realize RA could be hard to diagnose too.

I have only been on xPAP for 6 months, and effective therapy on the ASV for two. I was hoping clearing up that hidden issue would bring more relief. It still may.

I think that every joint in my body probably hurts. All of the joints in my fingers. My feet hurt when they hit the floor in the morning. Ankles, knees, low back, shoulder, elbows, wrists, SI jonts.

I was told I had carpel tunnel and tendinitis/ bursitis in my right shoulder, arm and wrist. But this is on the left side today, and the pain is widespread.

I do have an appointment in about 6 weeks. If I have a flare up I may try to see my primary care or a nurse practitioner so they can see it.

I have thought a bit about gout. I haven't had osteoarthritis xrays that I recall.

Not sure if it is for the same underlying reason as the finger swelling, or something different. The rheumatologist did talk to me about a connective tissue disorder with excessive mobility in my joints. He also put me on vitamin D, which was low on blood tests.

That was all before xPAP. And my memory was **so bad** that I am not sure I was reporting acurately.

At least it is progress from getting sent to lift weighs at physical therapy! That was no fun. And no help for someone who first needed REM sleep.

Thanks so much! Human beings are just too complicated, and we know so little. Glad to have finally got the OSA diagnosis. Much more useful than the good ol' "have you been stressed lately" .....

Cheers!
Michael

You probably have some form of arthritis, but could also have a cervical (neck) problem and that can affect just about everything else too, so I hope your MD comes up with an answer for you.

My mother had much the same symptoms and they diagnosed her with Polymyalgia Rheumatica. I might have that spelled wrong but she was much like you, hurt everywhere and she could barely lift her leg to take a step. This came on all of a sudden out of nowhere, that was over 15 years ago and she still has problems. She was given cortisone drugs and they really did help her at the time but she is a type that won't take any drugs for long so she refused them. Now at 80 she still has joint pain and her walking is bad. She is overweight and will do nothing to improve her life but that is another story. My advice is to try to maintain whatever movement you have while taking prescribed meds and you will do much better than if you just sit and complain like my Mom did. Sad to see her like this when I think her quality of life could have been so much better. Best of luck and prayers to you for relief from the pain and for an accurate diagnosis.

RA can be very difficult to diagnose. I have pain in both hands, wrists, elbows, shoulders, feet, knees and ankles. My bloodwork came back normal for a year, yet I was getting worse, but no visible swelling. 3 stage nuclear bone scan came back just fine also. Some days I can't dress myself or hold a glass. An MRI of my arms/hands finally told the tale, it is absolutely RA. I have tendonitis (caused by RA) synovitis, and tenosynovitis in every tendon and joint from my shoulders to my fingertips. Bloodwork is now beginning to come back with all the markers it was missing a year ago. I have been on methotrexate for 5 months now, and started Remicade yesterday. It takes persistance to get a correct diagnosis--the first rheumatologist said I was just getting older and should expect some pain--I am only 42! Aging causes pain, maybe, but I want to hold a pencil and feed myself! The diagnositic criteria has changed for RA also to rely less on bloodwork and more on symptoms (changed last October).

Hope you get some answers soon and find some relief. If you are not happy with your rheumatologist, find another one. There are some really good ones out there!

Thank you, Donna, Jeanette, and Hawthorne. I am very sorry for your suffering. And to others who have posted, for your own or your families.

You have given me some good ideas to explore before I see my doctor.

I guess we look for one big theory to explain everything. But I suppose I have OSA, plus something, and maybe another smaller thing, rather than one "big" explanation.

Julie, I do have cervical stenosis at multiple levels. I have impingement on the nerves on both sides of my neck, especially C3 and C7. I know that causes leg pain, it may cause some of the other pain.

Before I started on ASV, it would take me about 3 separate attempts to empty the dishwasher, with pain in my hands, arms, legs and back. Since I started on ASV that has gotten much better. I guess I will have to see over time if blood tests, etc., can help clarify the rest of what is going on.

Thanks again!

Best,
Michael

unadog- I thought I should add something to my post on this thread that may make you feel a little better!

I was diagnosed with sleep apnea about 8 years ago (had RA for 20 years now). Starting cpap therapy certainly did not "cure" my RA, since there is no cure--yet but, it DID allow me to sleep better so that I am not wakened by pain in the night. Before my sleep apnea diagnosis, I would wake often with RA pain in the night since I was not getting enough deep sleep and was having arousals, because of apnea events. The pain would break through all night.

With optimal cpap therapy, I am getting lots more REM sleep and not as many arousals. The RA pain does not wake me. It seems it does not break through when I am getting deeper more restorative sleep.

It also makes dealing with RA pain much easier during the day because I am not totally exhausted as well! Mind you, RA has it's own fatigue factor but it is different from sleep dperived fatigue!

I'm glad that cpap has done that for you as well, to an exent. Now, if you can just get a firm diagnosis for your symptoms and get on with treating it, you will be even better!

Hawthorne wrote:I would wake often with RA pain in the night since I was not getting enough deep sleep and was having arousals, because of apnea events. The pain would break through all night.

Yes, I had that too, even when taking heavy pain meds and sleeping pills.

It was like I was aware of the pain, and watching myself sleep. I would feel the pain, and be aware of it all night, even incorporating it into dreams.

I wonder if that is what is happening when there are so-called "Alpha intrusions" into sleep, though I think those are intrusions into Delta sleep? Whether that feeling of being aware of the pain corresponds to the brain activity? Hard to tell I guess without the EEG.

With optimal cpap therapy, I am getting lots more REM sleep and not as many arousals. The RA pain does not wake me. It seems it does not break through when I am getting deeper more restorative sleep.

I had only thought about it the other way around - better sleep reducing overall pain levels. But I see what you are saying too - that the pain kind of "rides on" or "pokes through" the
arousals. Your sleep stage lightens, then the pain is an additional "stimulus" that wakes you up more.

It also makes dealing with RA pain much easier during the day because I am not totally exhausted as well! Mind you, RA has it's own fatigue factor but it is different from sleep dperived fatigue!

Thank you. It is helpful to know that your experience was the same. Sorting out the different kinds of fatigue or pain is the hard part. What is lingering fatigue from untreated OSA/CompSA. What is from not quite adequate sleep - fragmentation due to continuing, deep pain that never goes away. What is pain from fibromyalgia - and whether that is different from pain from arousals/not enough sleep. And, finally, whgat is mechanical pain, which is what the doctors kept looking at for years, telling me that lifting weights was the solution! They really only pay attention to the things that show up on an xray, MRI, or test.

At least my cognition is improving, so I may be able to disentangle the causes and effects. And better report on what is going on to the doctor.

I have to say that I am still quite confused on all of the complexities and potential causes. But happy that I am making progress now with the xPAP treatment!

Cheers,
Michael

unadog wrote:Hello folks,

I have had chronic pain for many years, along with fatigue, etc. etc. for 20+ years. I have been told I have fybromyalgia by quite a few doctors, including two rheumatologists in the past year. I also have other mechanical pain - cervical stenosis, a tear in my shoulder socket (SLAP tear), etc. Plus OSA and CompSA.

Both rheumatologists told me that I don't have arthritis. That is, I don't have "nodules" on my finder joints charisteristic of rheumatoid arthritsis, there are no blood markers on blood tests, they said I don't have inflamation, etc. I was positive on 18 of 18 pressure points for fibro.

But I do have swollen, painful joints sometimes. My feet hurt, my hands hurt, etc. This morning, for example, the middle finger on my left hand is visably swollen and the joint and finger is painful. It is hard to bend the finger, almost like a sprain. I get the same kind of pain and swelling if I try to do anything like shovel snow or use my hands/arms.

I have had this for years, going back at least to 1993 that I remember. I would often wake up in the morning and my fingers would be swollen, I couldn't get my ring on, etc.

I asked the pharmacist about this while I was there today. He could see the swelling.. He said it obviously is swollen and is inflamation of some sort, although it apparently does not show up in blood tests. He suggested Lupus as one possiblility, although I don't seem to have some of those symptoms when I read about it - rashes, etc.

On a blood test from last fall, the only values that are a bit high or low from a large set of tests are:

* CRP - .6 (high end of scale)

* Urea Nitrogen - 23 (high)

*IGm - 49 (slightly low)

* Triglycerides - 194 (high)

I have been down trisi road many times in te epast 20 years, looking at possible causes. I have sleep disturbances, exercise intolerance - pain while walking, achy the next day, even though I used to love sports, etc.

I don't really expect an answer I guess, and I'll talk to my rheumatologist when I see him in July. I'm just wondering if there is something here that I don't "get", or should look at, that makes sense to others? Partly because the medications are different for inflammatory vs. non-inflammatory pain, etc. and I am not really on anti-inflammatories right now. (Just took some naproxen again today, I took it for about 1 year before taking a break a few weeks ago. I was on Celebrex a few years ago, etc.)

Thanks!

Best,
Michael

A lot of times, low level chronic inflamation will not show up in blood tests.

The fact that you have very high trigs suggests dislipidemia probably caused by carbohydrate intolerance/metabolic syndrome. You may also be suffering from gluten intolerance.

You may want to consider eliminating all grain products (wheat, rye, barley, oats, and corn) for a few weeks to see if you note a difference.

You certainly need to get a medical diagnosis for your symptoms.

What makes arthritis so hard to diagnose, by type, is that there are over 100 types of arthritis and many have similar symptoms. Unfortunately, they also all require different treatment, hence the long time for diagnosis.

DreamStalker wrote:The fact that you have very high trigs suggests dislipidemia probably caused by carbohydrate intolerance/metabolic syndrome. You may also be suffering from gluten intolerance.

You may want to consider eliminating all grain products (wheat, rye, barley, oats, and corn) for a few weeks to see if you note a difference.

The rheumatologist that I am seeing has talked about a low carbohydrate, all greens and protein diet. I guess that is where I am headed next!

He has 4 main areas that he looks at. Sleep was the first, and he is the one that referred me for a sleep study. Until I got on track with that I don't think I could focus enough to change my diet. Vitamin D was another, I have been doing that.

I was going to ask about sugar with the swelling. I was diagnosed with hypoglycemia when I was in college. I avoid almost all sugars and refined flours/foods, but had eaten a couple of granola bars that my son had the day before. OK, guess I know what part of the future looks like .... though it will be hard!

Hawthorne wrote:You certainly need to get a medical diagnosis for your symptoms.

What makes arthritis so hard to diagnose, by type, is that there are over 100 types of arthritis and many have similar symptoms. Unfortunately, they also all require different treatment, hence the long time for diagnosis.

I have an appointment in a few weeks. Kind of "prepping" for that I guess, to see what makes sense. I thought maybe starting xPAP and getting better sleep would clear up a larger percentage of issues than it did. But when I first started reading here I didn't see all of the SA folks complaining about all of the symptoms I had. And some who were on therapy were still struggling, so I thought there was something more ...

At least I am closer to being on track. I was seeing a surgeon for my neck and shoulder for almost 2 years. Of course he saw all problems as potentially surgical. He was able to identify the iisk issues with my neck and my shoulder tear. It just didn't explain enough of what was going on with me at the time.

I am happy though, I am doing **much** better since getting on the ASV! Before that, washing and putting clothes away was as much of a mental challenge before as it was physical one!

Thanks both!
Michael