Chronic fatigue and pelvic/hip/lumbar pain when walking (but not cycling)

by Nick B.
(UK)

Hi there,


I'm at my wit's end and am just wondering if you'd be able to point me in the right direction!

First up, a quick caveat - my joint pain is compounded with Chronic Fatigue Syndrome (CFS) so if my message appears a bit garbled it's because my mind is a bit fuzzy!

I'm a previously fit and active male of 28, I've just had a comprehensive nutritional evaluation and all was optimal except for the Vitamin D mentioned below.

Ok, so I'm afraid I'm going to be a bit vague because I have real trouble trying to describe the problem - I've been to see numerous GPs and a physio but am still no closer to solving the problem.

I used to walk to work and back every day for about 18 months - it was 3 miles each way. One day, 3 years ago, as I was walking it felt like my hip almost dislocated - I'm sure it can't have but it was quite a shock and painful. Looking back I was very naive and think I had been walking with inadequate shoes / carrying a very inadequate bag/load. Since then I've had trouble with my pelvis/hip/lumbar. In fact, a few days after I went to A&E as the pain in my back was so bad, but they found nothing. Nowadays I tend to avoid walking whenever possible as a distance > 0.5 miles tends to aggravate the situation. It does not get better with walking, only worse.

The pain is hard to describe - it's almost like a tweaking but I can't pinpoint the location - it feels deep - like almost in the hip joint itself, although sometimes I can feel pain in the buttocks or groin too - the physio thought it was some kind of buttock tendon problem (I think?) and massaged it but it didn't really help at all.

Very occasionally I'll also get the pain in the right hip, but it's much more prevalent in the left. There's no grinding or clicking as such and doesn't appear to be any limitation to the rotation of the joint (apart from the pain).

I sometimes find it hard to replicate the exact action that causes the pain, especially when explaining to someone - I just know that it will occur every single time I walk any distance.

Oddly I don't get any trouble when cycling.

I have been having a lot of problems just standing up straight - having to constantly shift position and feeling as though my lumbar is very weak. The trouble is the CFS (which developed about 1 year later) severely limits my activity levels. My GP thinks the pain is due to inactivity (I spend a lot of the day in bed), and perhaps some of the core muscles are weaker but personally I don't feel it is all down to that, especially the tweaking pain.

I notice that I do tend to stumble to the left (the hip with the most problem) - I think the balance problems are due to CFS but I just thought it might be significant that I stumble in the same direction each time?

Another complication is that I have recently had a Vitamin D test which showed I had a deficiency (12ng) - I have started to take supplements and think the lumbar pain is subsiding slightly but the pelvic/hip discomfort is still present. Additionally, I don't know how important it is but I gave up dairy products about 6-9 months before the problem started so wondered if that had also reduced calcium levels?

It was Kerri's site that brought me here in the first place! I've been treating the Vit D with about 10,000 i.u's per day for the last month and am being re-tested next week to see if my levels have improved.

I've also been taking magnesium to try and counter the Vit D's uptake.

I'm pretty sure the onset of the CFS was unrelated to Vit D deficiency as I was working outdoors in Sub-Saharan Africa when it first hit, so no lack of sunshine there! Thus I think it's more likely a side-effect than the root cause (as I spend so much time indoors these days), but of course I want to get it sorted out pronto.

The hip problem actually started quite a while before the CFS so I'm not convinced it's related to that or Vit D, but I should withhold judgement to see what my levels are like after the retest.

I guess in a way I'm not really in a position to treat any tendonitis anyhow as I'm unable to do much physical activity at all. Perhaps I'll re-visit it once I eventually manage to shift this CFS!

I appreciate that it will be hard to address the problem when I am so limited physically but I just want to know if there's anything I can do? I don't even know who to go to - my GPs just write it off as another symptom of CFS but I'm convinced it's not (it started before the CFS!). I'm not sure my physio has a clue what it is - is there someone that specializes in pelvic/walking problems? I don't even know what those specialists might be called or if they even exist!

Well, I'd be very appreciative of any advice you could give me - even just the title of the type of specialist I should see!

Many thanks in advance,

Nick B.




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Joshua Tucker, B.A., C.M.T.
The Tendonitis Expert
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Comments for Chronic fatigue and pelvic/hip/lumbar pain when walking (but not cycling)

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May 07, 2011
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Joshua Replies - Chronic fatigue and pelvic/hip/lumbar pain when walking (but not cycling)
by: The Tendonitis Expert

Joshua Answers:

Hi Nick.

First off, let's get that Chronic Fatigue Syndrome dealt with.

Who specializes in that? Kerri at www.Easy-Immune-Health.com.

I don't know your interaction with her, but the first thing that jumps to mind when someone goes to a foreign land and then gets any of a variety of health issues, is parasites.

If you haven't talked to her about that, I highly suggest it. Various bugs will leave you with CFS type symptoms.

Maybe you have some Tendonitis related issues, but if so that's the -least- of your worries.

Your Chronic Fatigue Syndrome, if that's what it actually is, sounds bad. It's not natural to have the symptoms you describe, and whatever that's all about is likely causing the hip problem.

I appreciate that your nutritional test levels cam back as fine, but I REALLY doubt their accuracy.

1. Get your Vitamin D level up to between 50-80 ng. ASAP.

You said your level was 12ng. That's not as bad as a 4, but 12 is still VERY low.

That's BAD.

I'm curious how much your levels came up at 10k i.u.'s/day. They may or may not, just all depends. Let me know when you get the results.

Go get a bottle of liquid vitamin D3, that delivers 2,000i.u.'s per drop (not per dropper full).

Then you may want to (because I can't directly tell you what to do) take 300,000i.u.'s with some food (fat soluble). Also, make sure to supplement with Magnesium too, as the Vit D supplement will pull magnesium to convert itself into the active form in your blood.

1-2 weeks later, do it again. Then start on a maintenance dose of 10,000i.u.'s per day, and get your level tested again.

If you tell your doctor you took that much, he likely will freak out, but A. your doctor clearly doesn't know anything about Vitamin D and B. hasn't helped you at all so far.

2. You're likely short on Magnesium too.
See: Magnesium Dosage
See: Magnesium for Tendonitis




It will be interesting to see if Vit D deficiency is the primary issue (It's absolutely playing some kind of role), or if it's parasitic, or....

As far as the hip pain. If that was already there before any CFS symptoms, it may or may not be related.

Questions:

1. How did the hip start? All of a sudden, or slowly over time?

2. Does it feel muscular, or bony, or? More details.

3. What exactly have you done for it so far?

4. History of injury? To hips, back, legs, etc?


May 07, 2011
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Joshua Replies Part 2 - Chronic fatigue and pelvic/hip/lumbar pain when walking (but not cycling)
by: The Tendonitis Expert

I can give you some ideas of what to do for it, and it shouldn't take much if any energy to do.

I don't know anybody in the U.K. as far as specializing in walking/running/hip physiology, but you don't currently have the energy for that anyway. First things first.

Systemic issues should be dealt with first, then soft tissue issues.

Figure out the source of the CFS with Kerri, and I'll give you some things for the hip.




More questions, more answers.



May 07, 2011
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Chronic fatigue and pelvic/hip/lumbar pain when walking (but not cycling
by: Nick B

Great stuff, thanks Joshua!

Ok, well as far as the Vit D goes, I must say that I *have* noticed a reduction in pain in my lumbar - and it feels a lot stronger than it has done over the last 6-9 months or so. So that's obviously great news.

However it hasn't really made much difference to the pain I get in the hip during weight-bearing activities (standing, walking etc.) It's definitely a different kind of pain too.

I'll definitely report back when I get the test results back - should be in 10-14 days or so I think.

I appreciate that the CFS is definitely a priority - I mean I really don't have a life right now! I will pop over to Kerri's and see if she has any suggestions, cheers for the tip. But you know, I'd been meaning to sort this hip out for a long time and I thought I might as well start looking into it while I have all this downtime!

To answer your questions:


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Joshua Comments:

Not saying the Vit D is the ONLY factor, but it often can be a MAJOR factor.

If nothing else, it's a hormone that's basically at the base of all your body operation, so when you have adequate levels, everything else can work better/do it's job better.




May 07, 2011
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Chronic fatigue and pelvic/hip/lumbar pain when walking (but not cycling)
by: Nick B

1. It was definitely a sudden start - I was walking one day and suddenly 'pop' felt like my hip just went. I was still able to hobble along to my destination, but then went to A&E although they couldn't find anything wrong.

What exactly did they do/test, to find something wrong?


2. In terms of describing it - this is where I have the most trouble. I'd say it feels like a *deep* pain - almost as if it were in the hip socket itself. Although the pain can migrate and sometimes it will actually spread to the other hip, but most of the time it's in the left one. It doesn't really feel like a muscular pain - at least not the muscular pain I'm used to. I hesitate to say it's like a nervy pain as I'm not really sure what that's like. It does sometimes spread down lower in the leg, but it just doesn't sound like sciatica from the descriptions I've read of it. I also went to a back clinic and they put my leg at an angle which they said would have me screaming out if it was sciatica.

When I walk, every time I put weight on it I feel like I lean heavily on that side and there's a little pain, although usually the worst pain comes just *after* I release pressure on that side. If I jab my thumb into various places on my buttock muscle I can often feel tender points but it tends to be hard to pinpoint it. Once the physio thought the large tendon was too tense and tried to massage it but I'm not sure that was the route cause of the problem as it didn't really make much difference.

Sounds like a possible ligament/connective tissue tear. Big or little, I have no way to tell from here. The pain switching hips is likely your muscles compensating/adapting, which is constant.




May 07, 2011
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Continued - Chronic fatigue and pelvic/hip/lumbar pain when walking (but not cycling)
by: Nick

3. I foolishly largely tried to ignore it to begin with - I used to work in an office with a lot of computer work so thought it was due to that. I knew I was leaving soon to go to Africa so presumed things would get better once I left the desk. And to be honest things *did* get better when I was up and about and outdoors, although it never completely disappeared. I still found the pain appeared, especially after walking some distance and when carrying a heavy load.

Other than that I haven't done much at all - a couple of visits to the GP who has pretty much dismissed it and a couple of visits to the physio who hasn't really figured it out yet but said he didn't think there was anything wrong with my spine. I appreciate it's difficult to diagnose when I'm not 100% full health.

Speaking from experience, it's tough to go find help when the people you've seen so far can't help....

But yes, your overall pain makes it tough to pinpoint something. Where are you located again? I wonder if there's a highly skilled massage therapist around that could palpate all the deep structures of your hip and understands that whole setup.



4. No real history of injury apart from this to be honest. I did tear the cartilage in my right knee a looooong time ago when I was a kid but I've been very physically active since then for about 15 years without any trouble.

I really thought this hip thing would have sorted itself out by now but I'm thinking that if it's still there 3.5 years later then it's probably not going to go away on its own!

That's a safe bet.

Phew, ok, well there's some more garbled info to chew on!

The more the merrier!


Systemic first, then let's play with your hip. It's actually a bit diagnostic to see what happens to the hip as you correct the systemic issue.







May 07, 2011
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Chronic fatigue and pelvic/hip/lumbar pain when walking (but not cycling)
by: Nick B

Thanks again for the help.

At the A&E, it's a little vague, but I remember them doing an x-ray which didn't show anything. They then made me bend down and touch my toes - which was fine. Then tried doing the slide arm down one side of the body as far as it goes etc - all fine.

It's actually sometimes quite difficult to reproduce the pain when I want to (frustrating when trying to demonstrate it!). One of the best ways I've found is to arch my back so my stomach sticks out and then kind of 'sit' my weight on that hip - then I can definitely feel it twinge in the upper left buttock (I often say hip but maybe I'm confusing the issue because it's definitely not anywhere near the bony part that sticks out - it's more like the pelvis area, but I really don't know my anatomy well enough to describe it well!)

Yes I think you're right with the compensating - there's definitely different kinds of pains going on - some that come and go. I really need to go and see someone that really knows what they're doing, but unfortunately I'm not really sure where to start. I'm based in the South West of the UK. The physio I saw before is ok actually, he was saying how there may be different 'layers' of issues that have built up over time due to my body compensating for the original injury and it's a case of unpeeling them one at a time. I will go back to him to see what he thinks this time (I've only managed to visit him about once a year so far due to the CFS!)

Just out of interest, if it was a ligament/connective tissue tear would there be any way to tell for sure? Like any kind of scan I could have done that would show it up? It was just so frustrating that the x-ray showed nothing there!

I'm confident that things will improve once the CFS is addressed. It's a bit of a waiting game at the moment as I've had nearly every test under the sun trying to pinpoint a cause (ruling out parasites etc.). I'm now experimenting with the vitamins/minerals etc so will work my way through Kerri's great site and hopefully something will hit the spot!

Thanks very much for the responses, really is appreciated. Will get back to update about the Vit D results once I get them.

Cheers,

Nick


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Joshua Comments:

MRI would show for sure, most likely. Xrays are really just good to show broken bones, basically.

That 'layers' theory is basically true.

Let me know about the Vit D results.







Jun 02, 2011
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Vit D Results
by: Nick B

Hi there, I've finally received my Vit D results so thought I'd just update this thread. My levels are now more than adequate - 295 nmol/L (118 ng/L) so I'm actually having to cut out the supplements.

I haven't noticed much difference in the hip/buttock pain although there was a bit of a reduction in lumbar pain. But it feels like the hip is a different issue to the lumbar.

No discernible difference with the CFS, but then I wasn't really expecting much there!

Cheers for the help though it's been really useful to talk it through - I think my next step is to get that MRI done. There's a specialist back clinic in London than I'm keen to visit as I think I really need a diagnosis before I can start trying to treat it!

Cheers,

Nick


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Joshua Comments:

That's great your Vit D is up. Keep that level right around 80. Your 118 is safe, but yes, no need to supplement to keep it -that- high.

So if you're taking enough magnesium and gluten intolerance isn't a factor, I'd have to send you over to Kerri for the CFS. If it's not those three things, it's beyond my scope.

As far as the hip and lumbar, check out this: The ARPwave System.

The page is more specifically for ruptured/torn tendons and ligaments, but the theory applies.

I don't know if they send the units overseas, but it's worth checking out. There might be an ARPwave therapist in London. And IMHO it's the best way to identify the -exact- cause of your hip and back pain.

There's more than one way to skin a cat, of course. And yes, a good diagnosis is VERY helpful in a lot of ways. Knowledge is power, as they say.






Jun 07, 2011
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I HAVE EXPERIENCED THE SAME THING
by: houknd@yahoo.com

I've had the exact same problems you describe. It started out with deep hip pain--felt like the hip joint. Crippled me at various times; at times the hip would "give out" when walking. CT scan & MRI of hip joint were basically OK. Ortho doctor didn't have a clue. In doing my own research for 6 years, I found that the main cause was from Nexium/Prilosec/omeprazole. Within 24 hrs. after taking Prilosec, the symptoms would start. Also after getting tendon tears with Levaquin, I found that the hip problems were similar.

Also had the lumbar/buttocks deep pain & pain going down the outside of my femor toward the knee. Exercise makes it worse; keeping it immobile helps. I would start looking at any meds you're taking--process of elimination.


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Joshua Comments:

Oh, yes, Levaquin can be a game changer, in a bad way. And other pharmaceuticals commonly mess people up.

Thanks for sharing that Houknd.

If you're suffering tears etc from Levaquin, the tears are the least of your problems. Your focus might want to be on the conditions that caused your tears, which are likely still affecting your body and keeping it from healing.

Thus, you may be interested in The Levaquin Tendonitis Solution ebook.

Levaquin massively depletes your body of certain nutrients and has other side effects, then you're stuck in a chain reaction of negative factors.



Jun 08, 2011
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Cheers!
by: Nick B

Great stuff, thanks for all the help Joshua!

Sep 08, 2011
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Pain in hip -- Chronic fatigue and pelvic/hip/lumbar pain when walking (but not cycling)
by: Anita

Hi Nick B,
Very interested to read about your mysterious pains. Sounds similar to mine and so far GP and hospital consultants have not pinpointed the cause.

In addition to the pain you mention, I wondered how far down your affected leg the pain goes, when mine is at its worst it goes down my outer calf and onto top of foot.

Regards
Anita

Jul 02, 2012
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pelvic/hip/lumbar pain when walking
by: Shari H.

Nick, I feel for you. I have had pain inpelvic/hip/laubar areas and many more areas(shoulders wrist, knees, feet, ect) since 2009 since taking Levaquin and I still haven't found a doctor who will agree levaquin has had anything to do with my pain. I pray and change doctors alot. I feel I will find one that will help me.

I am glad that I stumbled across The Tendonitis Expert for it has let me know that I am NOT crazy. Good luck to you. Shari H.



Sep 19, 2015
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Similar symptoms
by: Anonymous

I have the same thing in the hip you describe. It is likely iliopsoas tendonitis/ syndrome. Look it up.

Might need surgery for mine (arthroscopic) to lengthen the shortened tendon. Good luck.

BTW, Mg and Vit D replacement are imperative, as well as exercise but sometimes the damage is too far gone to get fixed without surgery. I'm an MD BTW.


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Joshua Comments:

Hi AnonyMD.

How exactly is the tendon 'shortened'?



Jan 16, 2016
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same problem
by: Elke

I also get pain in the hip and feel sore in my buttock only after walking 1/3 of a mile.

The pain is hard to pinpoint but during a visit to Disney World I wound up in a wheel chair.

I have had X-rays, MRI's, Vascular exams but nothing was found. I am at wits end.

Again, I have been prescribed physical therapy which has not helped in the past.

I exercise 3 times a week: 1 mile on a rowing machine, 4 miles on a bike and swimming 8 laps in an Olympic size pool - all without pain.

I am starting to give up, just endure it and walk only short distances. I am in great physical shape. This hip pain has gotten me depressed at times because I see no solution.

Please let me know if you find a cure.

I can certainly emphasize with all of you who are going through thes.



Jan 31, 2016
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An update!
by: Nick B

Hi there,

So thought I'd just give an update seeing as it's nearly 5 years since I wrote the first post.

I am pretty much recovered from the CFS now and am a heck of a lot more active these days.

I'm a keen surfer and currently work on a building site.

For the most part my hip pain seems to have resolved itself. This hasn't been due to a conscious effort on my part but perhaps a side effect of the lifestyle changes I made to tackle my CFS: moved country (to NZ), changed career (from office based to outdoors), etc etc.

To be fair, I rarely walk great distances (I tend to cycle, run or take the car), but I haven't noticed the pain for the shorter distances that I do semi-regularly walk (up to a couple of kms at a time I guess).

Interesting to hear about other people suffering from the same thing. I actually found out that my Aunt suffers a similar issue so perhaps it could be genetic?

If I was going to give any advice out I guess it would be to give your body a LOT of rest to recover from this. I'm talking about months if not years. Perhaps alter your lifestyle to try and minimize walking (but not exercise) for a good period of time and see if this helps? I have no real basis for this theory apart from my own anecdotal experience so take it with a pinch of salt. I just know that some things can take a very long time to recover from (after having witnessed CFS first hand).

But the good news is, it seems like your body CAN recover in the end :-)

I hope this helps someone somewhere and good luck!

Cheers

Nick



Jun 14, 2016
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hip pain walking and not cycling
by: Roy

I came to this site trying to isolate the cause of my walking hip pain. Like others here cycling is no problem. It would seem obvious that it would be weight bearing related but from the others here it is not the discriminator I imagined.

Here is another unexpected effect. I can push a lawnmower with little pain. Much less than walking but more than cycling which is pain free.

If someone figures this out please let me know.



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