Waking up with joint pain and stiffness. What could it be?

[wonderoushope]

Hi all,

I am just wondering what this could be. My GP in the past thought I might have fibromyalgia (because of the fatigue as well), as I go through bouts of joint pain throughout my body. It can shift from feet, to calves, arms, fingers, ear, costochondritis flare-ups, sore upper and lower back. I am also always tender all over my body when you touch areas, but wouldn't realise those areas are tender, only if I touch them.

In the last 4-6 months (coinciding with a strict elimination diet) it has been a lot better. Probably now every week it cycles just slightly. It certainly manageable though. At the moment I only notice it when I wake-up. It's like certain body parts feel, stiff and locked up. Like my legs sort of a stuck in a locked position and I have to sort of realign them. I also get sort of a numbness, in certain parts (probably the body parts I have leaned on to much in the night). The other thing I get is sometimes my ear joints sort of hurt are stiff from lying on them too long in the night (again I mainly notice it when I wake-up). Once I am up I don't feel much pain during the day though (but probably adds to fatigue). When I mentioned it to my GP, she didn't think it was an issue and just thought I slept too hard on body parts, but I feel there is more to it. I don't think it's normal to get stiff ears when you wake-up. Also now the costio pain when it flares up is always in the night time and sometimes wake-up in locked position unable to move. I never had this issue before I got ill. Costio always flared up for me during the day not the night. I have had costio pains since I was kid, but it was always a few seconds and in the day time.

If I had fibromyalgia I would have assumed I would have a lot more constant pain during the day. I am not in agony during the day. Perhaps though the diet is helping to keep it at bay? I feel like certain foods flare-up symptoms. Gluten especially.

Thoughts?

 

[alkt]

have you been to a muscular skeletal clinic .symptoms with joints seem similar to arthritis . my knees often stiffen/lock and its very painful to straighten them. but once they have been bent and straightened a few times they are fine the rest of the day.

 

[wonderoushope]

have you been to a muscular skeletal clinic .symptoms with joints seem similar to arthritis . my knees often stiffen/lock and its very painful to straighten them. but once they have been bent and straightened a few times they are fine the rest of the day.

Nup, I haven't gone to such a clinic. My GP did test for arthritis and it came back negative. Perhaps I should get a referral to a rheumatologists.

 

[adelheid55]

I have the same issues. When i wake up it's stiffnes and pain all over my Body. Ear pain and stiffness I know too. And I get better (most days, some not) when being up.
These sore points over your Body sounds like fibromyagia, but where does it come from?
I have been diagnosed with fibro many years ago. Now I know who is the culprit, it's chronic EBV.
It's a lot better now with adequate Treatment but not completely gone.

 

[ryan31337]

I had bouts of spine pain & stiffness upon waking that would get better once up and moving. I asked for some basic physio but ended up being assessed by a specialist, apparently this is can be a red flag symptom.

I'd recommend the same, go see someone at an MSK clinic. In my area you can self refer.

Ryan

 

[wonderoushope]

I have the same issues. When i wake up it's stiffnes and pain all over my Body. Ear pain and stiffness I know too. And I get better (most days, some not) when being up.
These sore points over your Body sounds like fibromyagia, but where does it come from?
I have been diagnosed with fibro many years ago. Now I know who is the culprit, it's chronic EBV.
It's a lot better now with adequate Treatment but not completely gone.

Interesting, because I did have EBV at some stage (test don't know when) and then a number of years ago at my worst with my immune system I got shingles too.

Having said that I have had stiffness in my joints since about 15-18 years old. I remember my fingers would always find it hard to drag rubbish bags (from my old sales assistant jobs). My fingers don't hurt with just basic work, but if I do pruning or use my hands to kneed doe, my fingers absolutely kill after 30 seconds or so. I think there is muscular skeletol issue for sure. It's really been bad since I got really unwell the last number of years though.

I had Pneumonia when I was about 16 years old...I think it all stemmed from there. The fatigue I feel now, is close to the level I felt when I had pneumonia.

What treatment have you had that has helped?

 

[wonderoushope]

I had bouts of spine pain & stiffness upon waking that would get better once up and moving. I asked for some basic physio but ended up being assessed by a specialist, apparently this is can be a red flag symptom.

I'd recommend the same, go see someone at an MSK clinic. In my area you can self refer.

Ryan

What was the verdic for you?

I had a MRI because specialist wanted to check for MS. It came back clear, apart from disc wearing, so makes sense to why I get back pain.

 

[ryan31337]

That particular symptom of morning pain & stiffness between the shoulder blades had gone by the time I saw the specialist.

I think it was related to swimming I had started after a long period of no physical activity. I had a break in the swimming and the pain went, then hasn't come back since.

 

[wonderoushope]

That particular symptom of morning pain & stiffness between the shoulder blades had gone by the time I saw the specialist.

I think it was related to swimming I had started after a long period of no physical activity. I had a break in the swimming and the pain went, then hasn't come back since.

I updated my reply.

"I had a MRI because specialist wanted to check for MS. It came back clear, apart from disc wearing, so makes sense to why I get back pain."

It's good pain hasn't come back...although you would think swimming would help!

 

[pattismith]

@wonderoushope ,

morning stiffness was part of my symptoms a year ago, with pain in my spine, shoulders, and in many other joints.

Morning stiffness is a common rheumatologic symptom, however the rheumies I've visited during my long lasting illness all dismissed this kind of diagnosis for me (after doing lot's of X rays and blood work).

So the first thing you have to do is to visit rheumies and see what they say.

After a long story of suffering, my spinal pain finally disappeared when I had a treatment with azythromycin (antibiotic), but rheumatologist won't give you this kind of treatment, so you have to proceed step by step.

 

[ryan31337]

It's good pain hasn't come back...although you would think swimming would help!

Ironically swimming is the only thing I've found that helps my lower back pain - something that was investigated but negative for ankylosing spondylitis.

I've since started the gentle swimming again and the upper back pain & stiffness hasn't come back....fingers crossed

 

[wonderoushope]

@wonderoushope ,

After a long story of suffering, my spinal pain finally disappeared when I had a treatment with azythromycin (antibiotic), but rheumatologist won't give you this kind of treatment, so you have to proceed step by step.

Can I ask who gave you that treatment?

 

[pattismith]

Can I ask who gave you that treatment?

It's a long story, I had this treatment for recurrent bronchitis (given by a lung specialist), but I mixed up the treatment and took double dose by error. The day after I woke with no pain, so It was obvious to me that my joints pain has something to do with a bacterial infection.
then I found a compassionate doctor who gave me a longer course of azythro + doxy, but I had to struggle with side effects on my muscles, and gave up 4 months later.
Then I realized that my lactates were too high and my potassium too low, so I arrived here on PR where I found a lot to help me to recover from this therapy.

A few weeks/months ago the pain was back in my finger joint (right index). Twelve days ago, I had a course of Clarithromycin to cure my hand bitten by a cat: it almost cleared completely my pain in my index...So I know the bacteria isn't gone, she is just under control.

 

[Tammy]

My joint pain and stiffness has improved significantly. I have been working on chronic EBV..............so I believe the virus contributed a lot.

 

[adelheid55]

@wonderoushope I took the amino acid Lysin whic helped a lot getting rid of most of the pain.