Just Arthritis in hips or CFS as well?

[nokmax76]

Hi all. Need help with a symptom I’ve been suffering for a while now. About two years ago, I started suffering pretty bad hip aches. It came on suddenly, but persisted and affected my walking and balance (already bad and stiff) so much I had to buy a walking stick. I thought, like other various bone aches I’ve had in the past, that it would go away eventually especially in the summer as I’m one of the lucky ones that get relief from many symptoms with the extra natural Vit D of the hot months.

However, this didn’t happen and my walking got so bad that my chronic fatigue consultant referred me to a sports/musco-skeletal clinic who scanned me and found I have Osteoarthritis. He said it was only slight but suggested I have pain-killing injections. I’ve had two now and the relief that I get from them is minimal. What I want to know is, could something else be going on in addition to the Osteoarthritis? Is there anyone else that suffers hip joint pain with or without Osteoarthritis due to CFS ? And, because the next stage is probably a hip-operation, have you been helped by the op? The last thing I want to do is go through the stress of having an operation and still not get much relief because the CFS was the main culprit all along.

 

[Jyoti]

I'm dealing with something similar @nokmax76. I believe it to be mostly it's own thing, but I also have hyper mobility, likely related to ME processes, which would exacerbate or even cause the problem.

I have had a number of treatments that you might want to look into before agreeing to surgery. It sounds like you are already skeptical of that as a solution. It seems to me that orthopedics and medicine in general are pretty unclear about how to identify the root of many structural problems, which is why such a large proportion of back surgeries are ineffective--just because you have artifacts on imaging does not necessarily mean those artifacts are causing the pain you are experiencing.

Slight osteoarthritis should not necessarily indicate the need for a hip replacement. Most people of a certain age have it. And most don't need surgery.

Make sure you investigate connective tissue issues--ligaments and tendons can be extremely painful and also grow weak with compensatory stance and movement, which you have likely employed, being in pain. Definitely possibilities in addition to the arthritis.

I've had steroid injections as well a couple of times and got a good few days from them and ultimately way too many side effects. I won't do them again. I did have PRP on a number of sites in my lumbar spine and hip area which were identified as having weakened or damaged or loose connective tissues. That cost a lot and required prep and follow up but did help in some of those areas. Not all.

In addition, I have had tendon fenestration which is a pretty simple procedure and that also made a positive difference. There are some other regenerative medicine treatments out there, all of which target connective tissue, so that might be a crucial piece of your picture--are your connective tissues strong and resilient or is there a possibility that they are more the problem than the joint itself?

 

[Rufous McKinney]

Make sure you investigate connective tissue issues--ligaments and tendons can be extremely painful and also grow weak with compensatory stance and movement, which you have likely employed, being in pain. Definitely possibilities in addition to the arthritis.

something is very wrong, in my hip flexors/ hip area.. I have very weak ligaments and tendons from protein being broken down via the ME.

1) is this fibromyalgia type pain? its intense, but it goes away entirely if I am far less run down or not PEM.

2) its not the bones; its not inside the joints.


-the muscles (it feels like muscles) seize up if I try to walk very far: they just stop working all together, like I am paralyzed.

 

[Jyoti]

2) its not the bones; its not inside the joints.

This is my experience, Rufous, as well. An MRI of the hip joint showed almost no arthritis, which is weird since I have it in my spine and knee, but .... I'll take what I can get. However, the tendons and ligaments are trashed --just like the ones in my neck--and like you I assume that it is a knock-on effect of ME.

-the muscles (it feels like muscles) seize up if I try to walk very far: they just stop working all together, like I am paralyzed.

I am not sure I have quite the same experience, but if I walk too much the pain is unbearable. I need a cane and can only limp about the house for a while until things calm down. So...close to paralyzed. I have discovered --to my horror--that my muscles, particularly gluteus medius, on one side had become frightfully weak. I had found ways to recruit other muscles but of course, you can try that trick only so long before you get stopped in your tracks. PT has been a long road--two years now--but I am demonstrably stronger and while that does not stop the pain from ripped tendons, it does give me more latitude, and I assume it contributes stability.

Fenestration is basically poking holes into an already injured tendon to encourage blood flow to the area. It ought to be done under ultrasound guidance. I read that if a tendon is damaged, and the body has not been able to heal it, after a while, it accepts the status quo and stops actively attempting repair. Fenestration wakes up the body's natural inclination to fix problems. It is pretty painless and easy if it is available where you are now.

 

[Rufous McKinney]

-that my muscles, particularly gluteus medius, on one side had become frightfully weak

these are the biggest most demanding muscles, I read. (thighs, glutes) and so perhaps we are just not delivering oxygen adequately to the areas...or the mitochondria become more taxed.

Or: some other reason.

just like the ones in my neck

I'm sicker on my right side, and it's the right side of my neck unraveling. so then my right eye is: today I can't hardly see, so I'll be exiting the computer, very soon.

Fenestration

never heard of that!

An MRI of the hip joint showed almost no arthritis,

I had a bout of elbow bursitis....that lasted for months. And nobody understands it, the doctor claiming I injured my elbows (OH?).

I can describe that the elbow which swelled up with fluid never hurt. The one that never got swollen hurt very much.

So I'd comment about this pain. And the doctor response is: arthritis.


My response: NOPE

its OUTSIDE my elbow hurting. It's the surface of the bursa, hurting. Its not anything they describe, nor do they even let you describe it: because they've jumped to "Its Arthritis".

I had to cure that myself, too. thanks, doctors.

 

[Slushiefan]

I have a problem with moderate to severe pain in my hips, lower back, spine, neck, and shoulder joints. I occasionally have wrist and hand pain as well. I am 52, have comorbid conditions of CFS, fibro, psoriatic arthritis, and ankylosing spondylitis for ~20 years.

I am fortunate to be a US military veteran in the VA healthcare system, so I am able to get many types of diagnostics and imaging done on these painful areas, with no pushback re: costs. Unfortunately all of of this diagnostic data for free is of no use. None of it points to a clear diagnosis or cause re: arthritis.

On X-ray, MRI, and ultrasounds; I show some signs of mild, moderate, and severe osteoarthritis in a couple large joints, in the spinal vertebrae, and elsewhere eg coccyx. The wrists and hands show some minor degeneration; but no clear markers of arthritic disease.

Summary - It is very difficult to tell if the root problem of pain and/or osteoarthritis in some joints are caused by something that could be helped by eg surgery, or if after going through a surgery (and all of the risks with that) I would face no improvement due to the actual cause of the pain being the overlapping comorbid conditions of fibro and cfs.

I recommend anyone with joint pain and these conditions (CFS, fibro) considering surgeries to improve things move slowly, and give it lots of time in order to raise their confidence, before assuming the risks associated with surgery.

It seems to me cfs and fibro really amplify the minor pains of arthritis, and therefore pain with only some or mild indicators of arthritis could easily give a false impression regarding potential improvement from surgical interventions.

 

[Mary]

@nokmax76 , @Jyoti , @Rufous McKinney , @Slushiefan - you might try evening primrose oil or borage oil. Years ago a doctor (orthomolecular) recommended this to my parents for arthritis in their knees and sure enough, it helped. I remembered it years later when one of my knees was pretty painful, would get swollen, etc. I'd injured it a long time ago and it's prone to act up, would get swollen and painful, and periodically I had to wear a brace with it - it was so painful. Anyways, I started taking evening primrose oil and I have not had to wear a knee brace since - it's literally stopped swelling up. I take 1300 mg. 2 x a day (Now Foods makes one and also Swanson vitamins)

One of my sisters has arthritis in her lower back and the EPO keeps it under control, as long she keeps taking it.

As I recall, it didn't take long to see or feel results - maybe a week or 2? I can't remember exactly but definitely not long in ME/CFS time!

 

[Slushiefan]

@nokmax76 , @Jyoti , @Rufous McKinney , @Slushiefan - you might try evening primrose oil or borage oil. Years ago a doctor (orthomolecular) recommended this to my parents for arthritis in their knees and sure enough, it helped. I remembered it years later when one of my knees was pretty painful, would get swollen, etc. I'd injured it a long time ago and it's prone to act up, would get swollen and painful, and periodically I had to wear a brace with it - it was so painful. Anyways, I started taking evening primrose oil and I have not had to wear a knee brace since - it's literally stopped swelling up. I take 1300 mg. 2 x a day (Now Foods makes one and also Swanson vitamins)

One of my sisters has arthritis in her lower back and the EPO keeps it under control, as long she keeps taking it.

As I recall, it didn't take long to see or feel results - maybe a week or 2? I can't remember exactly but definitely not long in ME/CFS time!

Thanks so much for the suggestion! I appreciate it.

EPO oil also helps with high blood pressure, which I took it for before. I recall it made me very sleepy last time I tried it so I dropped it, but I think I will give it another try.

FYI for anyone trialing EPO - the side effect of sleepiness was improved for me by starting with a low dose, then moving up the dosage after a few days.

 

[nokmax76]

Thanks all, and I do mean all, for your replies. I rarely start threads and it's even rarer that I like every reply that I get. This summary in particular:

"Summary - It is very difficult to tell if the root problem of pain and/or osteoarthritis in some joints are caused by something that could be helped by eg surgery, or if after going through a surgery (and all of the risks with that) I would face no improvement due to the actual cause of the pain being the overlapping comorbid conditions of fibro and cfs.

I recommend anyone with joint pain and these conditions (CFS, fibro) considering surgeries to improve things move slowly, and give it lots of time in order to raise their confidence, before assuming the risks associated with surgery.

It seems to me cfs and fibro really amplify the minor pains of arthritis, and therefore pain with only some or mild indicators of arthritis could easily give a false impression regarding potential improvement from surgical interventions."

Hit the bullseye for me. My long-term memory is as shot as my short-term memory these days otherwise I would have mentioned that I was suspected of having Lupus or a connective tissue around a decade ago, but the very last test I had (without any real medical intervention) showed low markers so that book was closed. I have a follow-up appointment with my consultant coming up. I still have a few weeks to go before I can be 100% sure the last injection hasn't worked but if it doesn't, I'm going to ask for further investigations into my conditions before any more treatment. BTW I didn't have any reaction to my first pain-killing injection, which was a steroid but the second injection was Hyaluronic acid (brand name Ostenil) which, because it's not organic, is supposedly reaction-free and can be given in much shorter intervals than steroids. It's a fairly new treatment and many people, especially athletes swear by it. All I can say is that I haven't had a reaction so far just in case anybody wants to try it as an alternative to steroids. As always DYOR (Do Your Own Research). Thanks again people. Will report on the follow-up or any changes.

 

[Violeta]

Andrographis has been found to help with the pain from osteoarthritis. This study deals with knees, but I don't see any reason why it would not help with the hip area, too.

https://pubmed.ncbi.nlm.nih.gov/30968986/

 

[Violeta]

Quercetin prevents progression of osteoarthritis.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9930437/

 

[Jyoti]

you might try evening primrose oil or borage oil.

I just MIGHT! Thanks, @Mary

 

[nokmax76]

Oh boy. Bit of a sad update. The last injection definitely hasn't worked. Had my follow up with my consultant but was so brain-fogged because of unavoidable activities the night before that I didn't really question him as much as I wanted to. He was adamant that the degree of arthritic disease I have would supercede any other musco-skeletal condition I have and I let it go because I just couldn't think of anything to say.

Good thing is that I had an ultrasound done and it showed no new swelling or progression.

Will have another appointment in the new year when we may have to look at surgery which I really don't want but until then I'm going to have a look at any natural supplements/alternative medicine I can try. Thanks for all the pointers above.

 

[Judee]

Just an odd question but you haven't taken any fluoroquinolones, have you?

I took just one dose in the hospital in the beginning of September and it feels like all the ligaments on my legs have become over- stretchy from my hips on down.

It's painful and it took me until just recently to realize that is when this new symptom started.

 

[Rufous McKinney]

My hips are aching and aching for days in a row at the moment from Overdoing. Yet I can also go for days and days without any aching issue.

"something hurts" But we lack the capacity to grasp what IS hurting. Or articulate it in a clear manner.

 

[Rufous McKinney]

because of unavoidable activities the night before

my power was shut down for four days....due to a mixup with some workers out on the street.

water disappeared eventually. (pump can't pump)

Filled up the cisterns, water disappeared entirely and mysteriously.

Our front gate lock broke. Cannot lock the main door.

the two garage doors now wont' open: thanks to the workers.

Property Management sort of screwed up.

 

[Judee]

my power was shut down for four days....due to a mixup with some workers out on the street.

water disappeared eventually. (pump can't pump)

Filled up the cisterns, water disappeared entirely and mysteriously.

Our front gate lock broke. Cannot lock the main door.

the two garage doors now wont' open: thanks to the workers.

Property Management sort of screwed up.

Oh no. That's a lot to deal with. So the electricity is back up? Will you be able to get water soon?

And will property management come back to fix everything soon? I hope.

 

[nokmax76]

Just an odd question but you haven't taken any fluoroquinolones, have you?

I took just one dose in the hospital in the beginning of September and it feels like all the ligaments on my legs have become over- stretchy from my hips on down.

It's painful and it took me until just recently to realize that is when this new symptom started.

Hi sorry for the delay in replying. No I haven't take any fluoroquinolones. Almost wish I had, we might be on to something. Funnily enough, I am at the moment taking a penicillin antibiotic for a mouth infection which is giving odd side-effects but nothing to do with the hips.

My hips are aching and aching for days in a row at the moment from Overdoing. Yet I can also go for days and days without any aching issue.

"something hurts" But we lack the capacity to grasp what IS hurting. Or articulate it in a clear manner.

I think I am getting to the stage where I need a chaperone with me to attend appointments now. What didn't help was that there was hardly any delay between my arrival and being called in to see the doctor so I had no chance to catch my breath. Still I felt ok but when I got into the consulting room - it's like someone cut the power to my brain. I'm sure you've all been there - is like the tv screen in our heads just goes blank, during your favourite show. It's annoying, frustrating but if we get up and try and adjust the set in any way, we risk making things worse. So we just have to wait for the screen to adjust itself. On the train home, thirty minutes later, I remembered exactly what it was I wanted to say....

my power was shut down for four days....due to a mixup with some workers out on the street.

water disappeared eventually. (pump can't pump)

Filled up the cisterns, water disappeared entirely and mysteriously.

Our front gate lock broke. Cannot lock the main door.

the two garage doors now wont' open: thanks to the workers.

Property Management sort of screwed up.

Uh-oh that sounds rough. I hope by now your water and lock problems have been sorted. And you have time to rest from the PEM you've probably got.