So confused again.

Fuzzyhead

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Here goes, long story. I havent been well for over 20 yrs and had every test imaginable so I got told cfs/me. I had a few brain scans over the years and all normal. I woke up about 5 hrs ago and went to knock my alarm off and I had awful vertigo. This carried on for weeks, awful fatigue, headaches etc. I practically begged for another mri which showed a couple of lesions. I had a lumbar puncture and evoke potential test which were normal. Neurologist said migraines 🤷🏼‍♀️. The vertigo and fatigue eventually lifted and I plodded in. 18 months ago I got a sore swollen wrist, finger etc and then in the other side. The fatigue was awful again, had bloods done and my inflammation markers were high. I got sent to a rheumatologist and got diagnosed with rheumatoid arthritis. I had a course of steroids and felt the best I have felt for years. I was also put on sulfasalazine which I'm still on. Anyway 6 months ago I woke up with all the right side stiff neck, shoulder, spine pain, awful fatigue, stabbing pains in my right side of ribs, stabbing pain in right leg, little lumps on my back between my ribs, hot flashes, restless leg syndrome etc. I saw the rheumatologist again in February and he said my neck/back pain etc cant be with the rheumatoid arthritis and put me forward for physio and a nerve conduction test to see if its carpal tunnel. My brain fog, anxiety, depression is awful and I'm just in pain on my right every single day. I feel like I'm back to square one. Beginning to wonder if its something else going on like ms again. I feel deflated.
 

Gijs

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Hi Fuzzyhead, isn't it a strange disease. It can be that you have CFS and Rheumatoid arthritis. It is well known that some CFS patiënts feel relieve after the use of steroids. Mostely temporarely. The lesions in your brain is also found in CFS patiënts. I hope you feel better soon. It is awafull the pain and also the anxiety.... Take care!
 
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Here goes, long story. I havent been well for over 20 yrs and had every test imaginable so I got told cfs/me. I had a few brain scans over the years and all normal. I woke up about 5 hrs ago and went to knock my alarm off and I had awful vertigo. This carried on for weeks, awful fatigue, headaches etc. I practically begged for another mri which showed a couple of lesions. I had a lumbar puncture and evoke potential test which were normal. Neurologist said migraines 🤷🏼‍♀️. The vertigo and fatigue eventually lifted and I plodded in. 18 months ago I got a sore swollen wrist, finger etc and then in the other side. The fatigue was awful again, had bloods done and my inflammation markers were high. I got sent to a rheumatologist and got diagnosed with rheumatoid arthritis. I had a course of steroids and felt the best I have felt for years. I was also put on sulfasalazine which I'm still on. Anyway 6 months ago I woke up with all the right side stiff neck, shoulder, spine pain, awful fatigue, stabbing pains in my right side of ribs, stabbing pain in right leg, little lumps on my back between my ribs, hot flashes, restless leg syndrome etc. I saw the rheumatologist again in February and he said my neck/back pain etc cant be with the rheumatoid arthritis and put me forward for physio and a nerve conduction test to see if its carpal tunnel. My brain fog, anxiety, depression is awful and I'm just in pain on my right every single day. I feel like I'm back to square one. Beginning to wonder if its something else going on like ms again. I feel deflated.
Lyme and/or some other infection? Been tested recently?
 
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Wouldnt an infection show up in my bloods?
Not unless they actually run the specific tests which test for exposure to the disease (antibody tests) or active disease (PCR tests). The normal blood panels that they run that test your mineral levels, red and white blood cell counts, etc. don't necessarily show signs if someone has an infection.
 

Fuzzyhead

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Not unless they actually run the specific tests which test for exposure to the disease (antibody tests) or active disease (PCR tests). The normal blood panels that they run that test your mineral levels, red and white blood cell counts, etc. don't necessarily show signs if someone has an infection.
I had a private lyme test from armin labs about 6 years ago and I tested weak positive but my gp wouldnt accept them.
 

lenora

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Hi Rebecca under the papyrus...I'm glad that you've also been to a neurologist. A lot of problems can be tested for and ruled out and it's almost necessary to have a good one.

Exactly what were the lesions that showed up on the MRI? I hope your doctors are in good communication. It's becoming more and more common for that to be lost in our world of COVID today.

It's good that you went to a rheumatologist also. As a matter of fact, those are the doctors who are most likely to recognize the symptoms of CFS/ME. You may or may not have carpal tunnel syndrome...it's easy to mistake other symptoms for those of carpal tunnel.

Have your records transferred so the neurologist can also see them. As a matter of fact, it would be best if your picked them up at the Radiology Dept. of the hospital, along with the results of your lumbar puncture, and keep a copy for your own file and one for the neurologist. Symptoms are often hard to tell apart, so do be patient. I just hope you're able to get an answer.

I'm a victim of fibromyalgia (FM)....look it up to get a clear understanding of what it is. I also have problems with my ribs...painful, aren't they? You may be put on something like amitrpytiline or gabapentin to help with the pain and inflammation or even the second generation drug, lyrica. Trust me, they do help but the side-effects aren't easy to deal with. I found lyrica to be the most effective and easier on my system. But we're talking over a period of many years.

There is now a compound ointment that helps with this pain, also. It will require a prescription from your Dr. and has to be made at a compound pharmacy. Ice has also helped me in the past...heat seems to tighten things up too much (in my case). The usual routine is 20 minutes on and 20 off. Ace Bandage makes great ice packs that are fabric covered, and there is one large enough to almost cover your entire back. This will help numb the pain, but don't overdo it. Fortunately, these don't freeze rock hard and I just put a cloth of some type over them and always have extras in the freezer. Until the inflammation is controlled, you'll have pain.

Steroids are helpful in reducing inflammation, but do have the odd effect of making you feel capable of doing anything while on them. Then, when you're off, the weakness is almost unbearable. I suffered 10 falls after steroids were stopped and I'm not planning to resume them anytime soon.

I'm probably a fair bit older than you, have been through almost everything with this and I'm glad you had the lumbar puncture. I re-read your introduction and I can see that you're dealing with a neurologist...that's good.
I would see what both doctors have to say about your wrists...you don't want unnecessary surgery if you can avoid it. I was told I had carpal tunnel about 35 yrs. ago and it wasn't that at all. Fortunately this was before I had surgery. I still have pain today....the same type even. CFS is a constant companion.

Some things don't go away. That's why I say that something to help with the pain is probably best for you at this time. I don't have FM nearly as horribly as I once did. It has changed form over the years...the knots have disappeared. Acupressure helped, but we all have different responses to treatments.

It sounds like you've done everything possible with your doctors. How is your BP? I had very low blood pressure for years (POTS wasn't known about at that time) followed by what is now extremely high BP which started when I was 42. It did take me a long time to get over the after-effects of the steroids.

I'm also on small doses of xanax to help with anxiety. I was on non-additive meds for years, but I finally had to be moved to the big guns at the time I had shingles a number of times. Take good care of yourself, sound nutrition, liquids...the usual things you've heard about. I wish you well. Yours, Lenora.
 
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I had a private lyme test from armin labs about 6 years ago and I tested weak positive but my gp wouldnt accept them.
Arminlabs is not a reputable lab. I wouldn't get retested with them again

Anyway, your story sounds kind of similar to the story of Dr. Steven Phillips. You might want to take a listen (time stamped).


There are a number of challenges with being diagnosed / treated for a chronic/latent infection. First is finding a doctor who's not a quack and is ideally well-versed in the idea of latent infection causing chronic symptoms. Second is getting the appropriate tests and the right diagnosis. Third is the treatment, especially if a firm diagnosis isn't possible. Anyway, good luck.
 

Booble

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So sorry to hear of your discomfort.
When the body seem to attack itself we run into these things.
Our poor bodies. They are trying to help us and overdo it.

I hope you find some relief.
 
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I know this is an older post but hope you figured things out. If not, I would suggest trying to see a neurologist and hopefully they would do an MRI of your spine. With all the one sided symptoms it might be a spinal issue. Just a thought.