Do you have deep pain in bone and/or joints?

For SEIDS patients, do you have any pain in the following areas? (please describe pain in response)

  • Ribs

    Votes: 6 54.5%
  • Long bones

    Votes: 9 81.8%
  • Ankle

    Votes: 2 18.2%
  • Knee

    Votes: 8 72.7%

  • Total voters
    11
  • Poll closed .

ChrisD

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I used to have basically all of those at the start of my illness. Many of which I have discovered to be potentially related to positive Lyme and co infections results.
 

BeADocToGoTo1

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Yes to all. The deep rib pain wrapped around to the shoulder blade and deep shin pain both lasted for years.

In hindsight it (and my CFS) was all due to nutrient deficiencies caused by pancreas damage. The pain was a signal my body was giving, but I did not understand it until years later. In my case muscle and bones were used internally as fuel to keep the heart ticking and the lights on.

All pains were resolved when EPI and nutrient deficiencies were handled.
 

taniaaust1

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I used to have pain in all those places.. I dont think there was anywhere which did not hurt, it was very deep aching sometimes throbbing pain. Some of the very worst pain was in my long bones eg bones in legs. I do not know why I used to get that but do not get that now
 

roller

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hip joints: deep, every move quite painful.
i had hip pain perhaps from 10 - 12 or so. it started for years only at one side, on and off.
after years(10+/- ?) at the other side, too.
- i think, allopurinol helps well.

long bones: drilling into flesh, pressure in leg
a different pain can be in tighs (front), worst when over the knee, less in arms/shoulders.
in me, this is caused by helminths only.
it happens, when they are under attack. when they move uncontrolled.

would like to know how ppl on benzo-withdrawal feel, whether there is any strong pain in long bones area.
 
Last edited:
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My ribs were the first thing besides my neck (not on the poll) to hurt. My right knee hurts and is red and hot to the touch. I also have wrist and hand pain and cramps. These are deep and at times sharp pains. I am always in some level of pain.
 

percyval577

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Sometimes my long bones hurt "on their surface". It feels a bit like fungi on fruits look. It occures.roughly when my brain clears up a bit. It´s not a problem.
Very occasionally I have pain "around the knees." Sometimes acompanied by the same feeling around ellbows and handjoints. It´s strange but not a problem.
I know also pain inside one knee as well inside one shoulder. In the knee it hinders to walk properly, but´s it´s rather not a problem.
My ribs can hurt a bit on the inner side. It mostly came along with uncomfortable breathing issues.
 

taniaaust1

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long bones: drilling into flesh,
I forgot that that is how I used to describe it back when I had it, I used to describe it as being like someone drilling in the bones. If someone did a search for "drilling" some of my old posts may come up.

Back when I had all those symptoms, I also had terrible pain to touch so could not stand to have my skin touched. Even a sheet or blanket on the bed hurt me and I could not have my children hug me.
 

Wishful

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I occasionally have sharp stabbing pains in a spot high up on my hip bones (usually right, sometimes left). It comes in periods, lasting days to weeks, then goes away again. Pressure on the spot would block the pain, but it would return immediately without the pressure. Twisting my lower spine would make it go away for longer. The last time it occurred, I discovered that pressure on my inner thigh was even more effective at making it go away faster and for longer.

My guess is that it's a perceived pain (not a physical source) caused by signals induced by malfunction or leaking across from other nerves, and the pressure somewhere along the nerves corrects the problem. Another possibility is that ME affects the processing of nerve signals, so the brain registers random noise in the nerves as false pain, and the pressure along the pathway alters the random noise in a way that makes the brain respond normally again.

It's only a minor annoyance for me, and I consider it just a minor malfunction of a complex system.
 
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I always have muscle bone pain in my lower legs especially the right. I finally made magnesium oil which is very helpful. But the worst is the all over muscle bone pain. It’s hard to distinguish the difference between bone and muscle when it’s not a joint and deep so don’t know if my feedback will help. I call it fatigue pain. Yesterday I’m not sure why, i was feeling really different, energized and I probably did too much. Today I had my granddaughter which I love so much, but moving at all hurt so much. I don’t know if these are mini crashes but it happens a lot. This fatigue pain doesn’t respond to anything but lying down. Anyone else have this?
 

BeADocToGoTo1

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I always have muscle bone pain in my lower legs especially the right. I finally made magnesium oil which is very helpful. But the worst is the all over muscle bone pain. It’s hard to distinguish the difference between bone and muscle when it’s not a joint and deep so don’t know if my feedback will help. I call it fatigue pain. Yesterday I’m not sure why, i was feeling really different, energized and I probably did too much. Today I had my granddaughter which I love so much, but moving at all hurt so much. I don’t know if these are mini crashes but it happens a lot. This fatigue pain doesn’t respond to anything but lying down. Anyone else have this?
Have you looked at amino acids or protein supplements to see whether this helps? In my case the muscle and bone pain was due to not absorbing nutrients and thus being deficient in many amino acids. My body was cannibalizing my own muscle tissue for amino acids, and bone for minerals.
 
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@Nanni
I have linked the ones I take here , but mine are from Amazon.

For all who do not know this little tip. On our homepage there is a link to the Amazon Smile store if you make purchases through that link, a small part is donated to Phoenix Rising. We keep this site running partially due to these donations.
 

BeADocToGoTo1

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Thanks so much for the information. I will. Is there a specific source that tends to be better for ME/CFS
The importance is the quality of ingredients. If you go with a protein powder, make sure it is organic, vegan, and no fillers, sweeteners, sugar and other garbage is added. Whether it is hemp, pea, rice, etc. is more of a preference thing and what your body can handle. I have to take pancreas enzymes in order to break down the protein into usable nutrients. There are amino acids supplements as well and I would go for something your doctor would recommend in terms of reputable brands.