Specific muscle problems in ME: forearm

filfla4

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Is this a regular thing in ME?

I've had ME for 28yrs and it's the first time I've had something like this.

I have a visibly inflamed forearm which is really painful, with the pain radiating both down and up my arm. It comes and goes, probably depending on how much I use my arm. I've had this since last January. My GP gave me anti-inflammatory meds which didn't do much. He recommended physio, which was very painful to do and didn't help. Now I decided to see an Orthopedic Specialist who sent me off to have an Ultrasound. Went back to the Ortho today. The Ultrasound is clear and he says there's nothing he can do.

Any suggestions anyone? I am so physically impaired, the last thing I need is to permanently lose the use of my right arm. I'm getting desperate.

Forearm.jpeg
 
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Is this a regular thing in ME?

I've had ME for 28yrs and it's the first time I've had something like this.

I have a visibly inflamed forearm which is really painful, with the pain radiating both down and up my arm. It comes and goes, probably depending on how much I use my arm. I've had this since last January. My GP gave me anti-inflammatory meds which didn't do much. He recommended physio, which was very painful to do and didn't help. Now I decided to see an Orthopedic Specialist who sent me off to have an Ultrasound. Went back to the Ortho today. The Ultrasound is clear and he says there's nothing he can do.

Any suggestions anyone? I am so physically impaired, the last thing I need is to permanently lose the use of my right arm. I'm getting desperate.

View attachment 44098
Did they check your blood flow? I had this one time in hospital: when a doctor pulled the needle through my vein and the blood dammed in my arm.
 

filfla4

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Did they check your blood flow? I had this one time in hospital: when a doctor pulled the needle through my vein and the blood dammed in my arm.
Not sure what you mean by "blood flow" exactly. I've recently had a lot of blood work done by a Haematologist and I have a follow-up appointment with the same on 6th Aug. From what I can tell my inflammatory markers are high; my immune markers are not good (flow cytometry) and there's much more out of whack. Hopefully I'll find out more then. Meantime, any advice on this arm issue is very welcome.
 
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Not sure what you mean by "blood flow" exactly. I've recently had a lot of blood work done by a Haematologist and I have a follow-up appointment with the same on 6th Aug. From what I can tell my inflammatory markers are high; my immune markers are not good (flow cytometry) and there's much more out of whack. Hopefully I'll find out more then. Meantime, any advice on this arm issue is very welcome.
If there is blood clotting in your arm
 

junkcrap50

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Compartment syndrome? Would have thought the doctors would think of that. But symptomatically that’s what you have. Extra pressure from swelling/lump pushing on nerves.

What do you mean the ultrasound was clear? What was inside the big lump? Did you spontaneously grow extra muscle there or something? You could insist on MRI.

Could it be a tumor? Looks like a hematoma. Could do exploratory surgery as last resort.
 
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Compartment syndrome? Would have thought the doctors would think of that.

What do you mean the ultrasound was clear? What was inside the big lump? Did you spontaneously grow extra muscle there or something? You could insist on MRI.

Could it be a tumor? Looks like a hematoma. Could do exploratory surgery as last resort.
A tumor doesn't come and go
 

filfla4

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Compartment syndrome? Would have thought the doctors would think of that. But symptomatically that’s what you have. Extra pressure from swelling/lump pushing on nerves.

What do you mean the ultrasound was clear? What was inside the big lump? Did you spontaneously grow extra muscle there or something? You could insist on MRI.

Could it be a tumor? Looks like a hematoma. Could do exploratory surgery as last resort.
This is the Ultrasound report:
 

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junkcrap50

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Looking at your ultrasound report, I'm not a doctor, but it doesn't really comment on the lump or compartments. It looks at the physical parts individually. But strange it makes no comment on what's under causing the lump. Even if there's no fluid or hematoma or growth, they should comment and say "no ____ under swelling location". Also they didn't look for or say "no thrombosis," which they should have I'd think.

Ultrasound should have found compartment syndrome. But a lot of the time with ultrasound, how they take their pictures limits what they can look for and could miss things. Also, it doesn't look like they did a doppler ultrasound to measure blood flow, which can find compartment syndrome or find deep vein thromboses.

Other questions regarding compartment syndrome.
How did it start? Huge lump next morning or gradual? Did you do any exercise with it? Or exertion with it? Doesn't have to be lifting weights, but maybe you opened a ton of jars, stirred some thick batter, or carried several milk jugs or 5 gallon water jug or something. Anything repetitive? Did you have to lift yourself up out of bed / tub? Did you hit your arm or injure it in anyway? Bang it against the door opening or in car door. Have something drop on it? Did you burn that area? Did an animal bite it? Does it get better with rest and nonuse?

There is a gold standard test for compartment syndrome: Intracompartmental pressure testing where they stick a needle in your muscle and measure pressure inside before and after exercising it. Should confirm it 100%. Description of test: https://epmonthly.com/article/diagnosing-compartment-syndrome/. But seems like this test would be most commonly found in the ER not an orthopedics's office.

Was your orthopedist a specialist in the hand and only did hand surgery? That's another person you see for a second opinion. Can always try the ER, which is a total crap shoot. Usually awful (go home and ice it), but sometimes they will order a ton of tests in a shotgun approach. They would see compartment syndrome often.

Have any doctors told you, "You do not have compartment syndrome." Because that's the most obvious likely cause and explains your pain and nerve symptoms. Just don't know exactly what's causing the compartment syndrome. And you 100% have to rule it out. There's different types like "chronic compartment syndrome" or "exertional compartment syndrome" which may explain how it comes and goes.

Also have to 100% rule out deep vein thrombosis. The clot can break off and kill you if it gets into your lungs or heart. That could cause compartment syndrome and swelling. Usually you'd see the whole arm and hand swollen. But perhaps it could be localized to a smaller vein and more localized. Also, clot size might matter. Had a family member who had a DVT in calf and had extensive swelling, but the clot of 12" long! Didn't see significant swelling (besides normal end of day) when the clot was 1", 2" or 6" long!

. I've recently had a lot of blood work done by a Haematologist and I have a follow-up appointment with the same on 6th Aug.
When was the blood work done? Any done, even a little, when this swelling started? Could be phlebitis (inflammation of vein). Can be caused by other things, but commonly IVs or blood draws.
https://www.sciencephoto.com/media/261143/view/superficial-phlebitis-in-the-lower-arm

Sorry for long post and disorganization of it. Hope it helps.
 

filfla4

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Thank you @junkcrap50. A lot to digest there.

I have to explain that I live on the tiny island of Malta in the Mediterranean. So medical specialists do not have the turnover of patients to be able to focus on only one area of their field. The doctor I saw is an Orthopedic Surgeon who would treat all ortho problems but this doctor is known for treating spinal issues. In fact, before sending me for the ultrasound of my arm, he sent me for an cervical MRI just a month ago, to rule out that this wasn't coming from my neck. It isn't. The MRI was fine.

Also, a bit of background. This started in Jan 2021. However in December 2019, about 13 months prior, I did have an injury. I took a bad fall and landed on my shoulder. I was diagnosed (CT scan was done), with damage to the top of my longhead tendon. It was very painful and took months to heal, after lots of physio.

So when I got this in my forearm, I assumed that somehow the problem had migrated down my arm and I gave this history to the Ortho. He didn't think the two were connected. I just don't know.

Thinking about when this started last January, I did have some regular bloodwork done at about that time. But I can't be sure that it was before. (I've now had much more detailed and specific bloods done earlier this month). Also, in early June, I was hospitalised for a week, with an actue kidney infection, where I was treated with IV abx, and was like a pin cushion with all the blood draws and testing that went on.

Meantime, no doctor has mentioned compartment syndrome at all.

As you can see, it's complicated. I've struggled a lot since I got my second Pf vaccine in April.

Thanks for your help.
 

Woof!

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Can you get a referral to a physical therapist familiar with advanced techniques like dry needling and deep muscle work? In my experience, they know sooooo much more about muscles and muscle function than most MDs and even orthopedists. I had something similar going on with my right knee for many months, and my PT turned things around completely with dry needling.
 

sometexan84

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Does the swelling feel like fluid?

Like @junkcrap50 says, you might want to do MRI, wherever there is swelling and pain. But you need to know exactly what the MRI is scanning as they are very specific and might not cover an area you wanted. For instance, i don't know the difference between an "arm" and "forearm" MRI.

Another on point remark from @junkcrap50, it really does look like a hematoma. But I'd wager it's not a tumor, and in fact there is not a ton of cancer in ME/CFS.

If it feels like fluid, it's probably either fluid build up from inflammation, or hematoma. The MRI should be able to see the inflammation, and if I was a betting man, I'd put money on them finding granuloma in the MRI... which is nothing to worry about, just inflammation from a bunch of immune cells

Also, a Rheumatologist might order this for you if another doc wont
 

junkcrap50

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. I was diagnosed (CT scan was done), with damage to the top of my longhead tendon. It was very painful and took months to heal, after lots of physio.
What kind of exercises? With weights? Did it use your forearm muscles a lot with the exercises? Were you in a sling or had your arm immobilized to heal prior to the PT? Or was you arm extremely deconditioned from homebound/bedbound/inactivity from CFS before your exercises?
Exercise is often the cause of compartment syndrome. But it's usually repetitive like running or tennis. But is possible from single exercises if you really exhaust/beat up your muscle. But I think it's unlikely from just doing PT work, and that it came on at the end of 13 months of PT, unless a single unique exercises was added later.

As you can see, it's complicated. I've struggled a lot since I got my second Pf vaccine in April.
Did you ever have COVID? Some people have been getting the vaccines despite having had the virus. There are lots of weird clotting problems in COVID cases (from vaccines too, but this predates your vaccines).
 

filfla4

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Can you get a referral to a physical therapist familiar with advanced techniques like dry needling and deep muscle work? In my experience, they know sooooo much more about muscles and muscle function than most MDs and even orthopedists. I had something similar going on with my right knee for many months, and my PT turned things around completely with dry needling.
Thanks. I don't know if physical therapists do that sort of thing here. Will find out.
 

filfla4

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Does the swelling feel like fluid?

Like @junkcrap50 says, you might want to do MRI, wherever there is swelling and pain. But you need to know exactly what the MRI is scanning as they are very specific and might not cover an area you wanted. For instance, i don't know the difference between an "arm" and "forearm" MRI.

Another on point remark from @junkcrap50, it really does look like a hematoma. But I'd wager it's not a tumor, and in fact there is not a ton of cancer in ME/CFS.

If it feels like fluid, it's probably either fluid build up from inflammation, or hematoma. The MRI should be able to see the inflammation, and if I was a betting man, I'd put money on them finding granuloma in the MRI... which is nothing to worry about, just inflammation from a bunch of immune cells

Also, a Rheumatologist might order this for you if another doc wont
It doesn't feel like fluid. It feels like a knot in the muscle, if you know what I mean. But I have noticed that when I massage it myself, with anti-inflammatory oil, to try to release the knot, the swelling and the pain gets much worse. So I'm now just applying (and not massaging) Ibalgin cream. With this, the swelling has gone down a lot since yesterday but the deferred pain is still there. I think it was so inflammed yesterday because the doctor was manipulating it. I need a long-term solution!
 
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filfla4

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@junkcrap50 I think deconditioning is definitely part of the problem. I haven't done weights etc. The physio involved manipulation and infrared heat.

No, I haven't had Covid, just two doses of the Pf vaccine. My immune system (prob autoimmune) is messed up and I really struggled after taking them, particularly the second. I think my immune system took a further bashing and it could be the reason why I ended up in hospital with a very very bad kidney infection.

I'm now being followed by several different teams in Outpatients. My next appointment is with a Haematologist on 6th Aug. I have been told that he with either refer me to an Immunologist, but since we don't have one in Malta, he'll either send my bloods abroad or wait until he comes here on a locum. Or, he'll refer me to a Rheumatologist. So I should probably wait till then. I was hoping that an ortho would sort it but clearly not.
 
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It doesn't feel like fluid. It feels like a knot in the muscle, if you know what I mean. But I have noticed that when I massage it myself, with anti-inflammatory oil, to try to release the knot, the swelling and the pain gets much worse. So I'm now just applying (and not massaging) Ibalgin cream. With this, the swelling has gone a lot since yesterday but the deferred pain is still there. I think it was so inflammed yesterday because the doctor was manipulating it. I need a long-term solution!
Are you sure that there is no allergic reaction involved? I don't know exactly but afaik Malta is no risk area for mosquitoes but perhaps other nasty stuff. Was redness involved? Was it warm?
Cancer would normally show up in blood work and this type there would be an enormous tumor. It's not I'm sure, because you sad it gets better and worse.

But you have lymph nods inside of your forearm

https://d3i71xaburhd42.cloudfront.net/c0e5e833e44ea2cae232e467be0e049611830ce3/2-Figure1-1.png

Could be related. Any other symptoms?

It's maybe just an oedema that goes as it came.

Here are some information

https://www.nhs.uk/conditions/swollen-arms-and-hands-oedema/