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Fatigue and sore back

wonderoushope

Senior Member
Messages
247
Hi there,

I have been doing pretty well health wise for the last 6-8 months. I am not perfect, but I manage to work 2 days a week in a stressful job now and don't crash unless something triggers me to crash.

I haven't been diagnosed officially, because to be honest I have been able to keep things under control myself through diet and pacing and it's more effort than it's worth to try and find decent specialists in Australia (Melbourne). I've tried and most so far have no clue. I found a wonderful dietician specialing in CFS and she has helped me immensely to get back on track. My GP has always suspected I have either fibromyalgia or CFS, but I would say I am pretty good these days and not completely in remission because I do have slight relapses but 80% better than I was, so I haven't really pursued an official diagnosis.

Anyway, although I have been in somewhat of a remission, I have noticed of late getting back pain again and with that major fatigue. Luckily it doesn't last long, usually now just a day and then wont reappear for at least a few weeks even months. But yesterday I was absolutely wiped out and had an achy back and just could not get out of bed all day as I felt so tired and couldn't find any energy to do anything, but then the next day the back pain is gone. Yesterday was particularly bad and I think it was because it was the second day trying Seroquel for insomnia. I only had 1/2 the dosage (12.5 mg) and I think that just tipped me over the edge, it was too much for my body to cope with. The flare-up with back pain increasing probably does coincide with my diet being a little bit more lax of late, but I think yesteredays flare-up was a lot worse because of the added Seroquel. I noticed on a strict elimination diet for 6 months I didn't really have any back pain issues (but I did have other aches and pains in other parts of my body). I do have worn disc (known from a MRI). Today back pain was gone and energy was back to being really quite good.

I guess my question is this something others find happens to them, that they ache for one day and then it disappears for 2 weeks or even a few months and then flares up for a day or so? I don't have what would be typical fibromyalgia pain, in the sense that I am not aching day in and day out, but all the pressure points hurt a lot when touched, but I actually don't feel the pain unless touched. At different times (mainly it moves from weeks to week) my pain transfers to different parts of my body, but usually not all at the same time. So some months it will be my calves, other months it will be my lower back, then my upper back, then costochondritis will flare-up, at other times my jaw will hurt, then my arms will play up etc but not all at the same time. In the past I suffered a lot from migraines, but that has died down considerably, I think to lifestyle and diet. I am wondering if I am more at the early stages of fibro and it's being kept under control with diet and lifestyle?
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @wonderoushope,

Just a shot in the dark but have you considered if your back pain could be inflammatory in nature? Key hints that this could be the case would be:
  • Onset of pain is usually under 35 years of age and is insidious
  • Pain persists for more than three months (i.e., it is chronic)
  • The back pain and stiffness worsen with immobility, especially at night and early morning
  • The back pain and stiffness tend to ease with physical activity and exercise
  • NSAIDs are effective in relieving pain and stiffness
An inflammatory arthritic condition like axial spondyloarthropathy will predominantly cause spine pain and stiffness, but can also effect other joints. Costochondritis is a common co-morbidity, as is inflammation where tendons meet the bone (enthesitis), which in my experience gives a feeling of pain that spreads to the calf when achilles tendon flares. Crushing unexplained fatigue is also the norm during a flare. There are other similar and overlapping conditions that present with psoriasis and/or gut involvement

I have a diagnosis of this now after finally seeing signs of thoracic spine inflammation on an MRI, along with high ESR and positive HLA-B27 status. In my case this has probably been rumbling on for a couple of decades but at a very low level, with periods of significant remission in between. It has taken this long for it to finally give me the characteristic signs and symptoms that are hard to dispute - before then it was suspected but not proven. There are biologics approved for use in these diseases, so whilst pretty serious you do have more treatment options compared to alternative diagnoses like CFS/Fibro/Hypermobility.

Ryan
 

Moof

Senior Member
Messages
778
Location
UK
Good points from @Ryan, and it's also worth noting that some inflammatory joint diseases may be affected by diet. High starch intake in particular is associated with seronegative diseases such as ankylosing spondylitis, though the links haven't been unpicked completely yet.

Also, if the shifting pain is in or near your joints, there are migratory forms of arthritis.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I also get lower back pain in the sacro-iliac area which triggers pain in my leg; not classical sciatica, as I don't get pain in the buttock, but it radiates from back to iliac crest, then hurts particularly in the shin.
I've had that on and off since 1997, with flare-ups every now and then, but often months between them. And usually hurting more when I'd had less sleep or was tired.

Unless it was really bad, it never stopped me doing things.

I've had doctors examine me but no MRI. I have had chiropractic adjustments, which have helped but never cured it. The chiropractor has told me my pelvis is slightly twisted.
The doctors all say "wear and tear" (which is not a diagnosis!) And definitely not a herniated disk. I can't count the number of times I've done the 90degree leg lift exam for them, and they say "nope, it's not a herniated disk" and sent me home with codeine (when ibuprofen did a grand job already and cost 48p or something in a store.) I never took the codeine.

Now most of the time it didn't bug me too badly, except for a few days of flare-ups now and again. Usually rest helped if/when that happened, and it didn't even warrant my taking a pain killer.

But prior to becoming (mysteriously) unwell in the Spring, it started to hurt again -weeks before, I would wake up with a stiff back -so much that I leaned to the right for five minutes after getting out of bed because I couldn't straighten up.
And now it will hurt whenever I have pushed my energy too far. I look on it as part of the whole exhaustion scenario. The more "crashed" I feel, the more the back aches. When my energy comes back up a little, or during short remissions, I don't feel it.
 

wonderoushope

Senior Member
Messages
247
@ryan31337 thanks for the information. How would I go about getting tested for such a thing and a diagnosis? The MRI (which was to check for MS) showed only disc wearing. I also had a test for arthritis which came back negative. My CRP has been elevated for a very long time (15+ years), showing inflammatory markers. It was over 30 at one stage, but now sits at around 5-7 just a bit over what it is meant to. Doctors and specialist don't know why? I suppose it could be an arthritic thing that hasn't come up yet on the tests.

I wouldn't say the calf pain is a joint issue (more muscle) but I have had issues with my feet too. At one stage they thought it was Plantar fasciitis but again that hasn't flared up for a number of years.

So it is like my pain shifts throughout my body at different times and I guess a lot of it is joint related. My back pain shifts from neck, upper and middle and lower and yes my spine feels very stiff and when I get massages it really hurts along the spine, but also very tender near lower back buttocks especially (I don't feel it really, until massaged and then as soon as they touch that area I realise how sensitive and painful it is and I am holding my breath not to cry). I also get very tender behind the ear and towards the jaw and if I rub it the wrong way it's hard to explain the pain...but I guess just very sensitive. I also get issues with certain drinks (mainly alcohol) that makes this huge cramping pain in my jaw and sort of numbs the area for about 10 minutes. I have had wisdom teeth out, thinking that would rectify it but it didn't, and dentists don't really know what it is. But it all seems to point to joint issues for me. Also as female terrible monthly cramps, since a kid.

I am close to 40, but pain issues have been an issue all my life.

When you say pain persists for 3 months, does that need to be nearly every day? I would say I would have pain throughout 3 months but not every day. Do migraines, get included in this? I had a period for a number of months where I was having terrible migraines and again just disseapeard.

Unfortunately, I can't really have much NSAIDs because they react with my sensitive stomach. I use to have them all the time for migraines but didn't realise that they were causing me to get gastritis. So now I steer clear of them.

I have a lot of inflammatory issues with my stomach as well. Severe food intolerances at one stage, which has finally settled down again.

One of the reason I thought it was CFS, is that I had PEM after doing exercise with a personal trainer. The last two months of training, I would just crash after a session and wouldn't recover for a few days. I did have joint issues when training, mainly in the feet.

Hmmm, yes, I can sort of see a theme of me having joint issues. The thing that sort has made me think a lot about this is the flare-up of costochondritis (which I have had since a kid) but has been increasing in duration and flare-ups.
 
Last edited:

ryan31337

Senior Member
Messages
664
Location
South East, England
@ryan31337 thanks for the information. How would I go about getting tested for such a thing and a diagnosis?
I would ask for a HLA-B27 test. This is a genetic marker that is strongly associated with these seronegative syndromes, which is to say an inflammatory arthritis without rheumatoid factor or anti-ccp. Unfortunately about 10% of the population are HLA-B27 positive, so its not a slam dunk but it should prompt further investigation if it is.

There seems to be several established diagnostic criteria, but generally it seems they want to see inflammation markers in the blood (which you appear to have) and some changes in MRI. HLA-B27 status is important, family history and co-morbidity factor in too.

I'm no doctor though so please don't assume what i'm saying will apply to you, I'm sure there are many other possible explanations but I just want to give the benefit of my experience :)

@ryan31337
I wouldn't say the calf pain is a joint issue (more muscle) but I have had issues with my feet too. At one stage they thought it was Plantar fasciitis but again that hasn't flared up for a number of years.
Plantar fasciitis is the other classic sign, along with the achilles enthesitis. Its not ankle joint pain, its the nearby tendon/muscle that is painful. Often there is a progression from enthesitis/plantar fasciitis, to SI joint inflammation (lumbar & buttock pain), before it eventually effects upper spine. Fatigue features heavily throughout.

@ryan31337
When you say pain persists for 3 months, does that need to be nearly every day? I would say I would have pain throughout 3 months but not every day. Do migraines, get included in this? I had a period for a number of months where I was having terrible migraines and again just disseapeard.
I'm not sure on the interpretation of that. I have had sporadic periods of pain and flares for 20 years, but it has only become persistent (in thoracic spine and thumb) in the past few months. Its a notoriously difficult and delayed group of conditions to diagnose (I've seen 8.5 years lag suggested), I wouldn't be surprised if there's an awful lot of people out there with subclinical problems like I had for decades before it finally becoming aggressively active.

I also have had periods of migraines, at times really quite severe & frequent, with no obvious cause. I'm not sure you can attribute this directly to a spondyloarthropathy though, way too many possible causes.

@ryan31337
I have a lot of inflammatory issues with my stomach as well. Severe food intolerances at one stage, which has finally settled down again.

Hmmm, yes, I can sort of see a theme of me having joint issues. The thing that sort has made me think a lot about this is the flare-up of costochondritis (which I have had since a kid) but has been increasing in duration and flare-ups.
Definitely worth seeking a specialist in these syndromes who might be able to put all the pieces together :)

Ryan
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Forgot to mention:

Unsure if your MRI would have picked up changes related to inflammatory arthritis if not instructed to look for it. There is also the issue of where they scanned - my first MRI 10 years ago only looked at lumbar region, as SIJ involvement is the classic first step in Ankylosing Spondylitis - the prototypical spondyloarthropathy that all doctors know about. Although I get SIJ symptoms, the SIJ remains clear on MRI, in my case it was only when they scanned the full spine did they see inflammation higher up. Unusual but not impossible.
 

wonderoushope

Senior Member
Messages
247
Forgot to mention:

Unsure if your MRI would have picked up changes related to inflammatory arthritis if not instructed to look for it. There is also the issue of where they scanned - my first MRI 10 years ago only looked at lumbar region, as SIJ involvement is the classic first step in Ankylosing Spondylitis - the prototypical spondyloarthropathy that all doctors know about. Although I get SIJ symptoms, the SIJ remains clear on MRI, in my case it was only when they scanned the full spine did they see inflammation higher up. Unusual but not impossible.
I think it scanned from head to middle back, but not the lower back. My GP suggested that she suspected that there would be issues with the lower back too if they had done a lower back scan as well :( I wish they had done a lower scan as well.
 
Messages
3
Hi there,

I have been doing pretty well health wise for the last 6-8 months. I am not perfect, but I manage to work 2 days a week in a stressful job now and don't crash unless something triggers me to crash.

I haven't been diagnosed officially, because to be honest I have been able to keep things under control myself through diet and pacing and it's more effort than it's worth to try and find decent specialists in Australia (Melbourne). I've tried and most so far have no clue. I found a wonderful dietician specialing in CFS and she has helped me immensely to get back on track. My GP has always suspected I have either fibromyalgia or CFS, but I would say I am pretty good these days and not completely in remission because I do have slight relapses but 80% better than I was, so I haven't really pursued an official diagnosis.

Anyway, although I have been in somewhat of a remission, I have noticed of late getting back pain again and with that major fatigue. Luckily it doesn't last long, usually now just a day and then wont reappear for at least a few weeks even months. But yesterday I was absolutely wiped out and had an achy back and just could not get out of bed all day as I felt so tired and couldn't find any energy to do anything, but then the next day the back pain is gone. Yesterday was particularly bad and I think it was because it was the second day trying Seroquel for insomnia. I only had 1/2 the dosage (12.5 mg) and I think that just tipped me over the edge, it was too much for my body to cope with. The flare-up with back pain increasing probably does coincide with my diet being a little bit more lax of late, but I think yesteredays flare-up was a lot worse because of the added Seroquel. I noticed on a strict elimination diet for 6 months I didn't really have any back pain issues (but I did have other aches and pains in other parts of my body). I do have worn disc (known from a MRI). Today back pain was gone and energy was back to being really quite good.

I guess my question is this something others find happens to them, that they ache for one day and then it disappears for 2 weeks or even a few months and then flares up for a day or so? I don't have what would be typical fibromyalgia pain, in the sense that I am not aching day in and day out, but all the pressure points hurt a lot when touched, but I actually don't feel the pain unless touched. At different times (mainly it moves from weeks to week) my pain transfers to different parts of my body, but usually not all at the same time. So some months it will be my calves, other months it will be my lower back, then my upper back, then costochondritis will flare-up, at other times my jaw will hurt, then my arms will play up etc but not all at the same time. In the past I suffered a lot from migraines, but that has died down considerably, I think to lifestyle and diet. I am wondering if I am more at the early stages of fibro and it's being kept under control with diet and lifestyle?


Have you ever thought about using CBD products to help with the pain?
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
The only other tools I could hand you are, magnesium in spray form, and the Far Infrared Heating pad, which is different than a regular heating pad.
 

wonderoushope

Senior Member
Messages
247
Hi @ryan31337 if you have had tests for arthritis and they came back negative would axial spondyloarthropathy be a possibility? Does the arthritis tests not pick this up?
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @wonderoushope,

Tests like Rheumatoid Factor and Anti-ccp that are used for Rheumatoid Arthritis are not positive in spondyloarthropathy (its the reason why some refer to it as seronegative spondyloarthropathy).

It depends on the diagnostic criteria used but often there is some marker in the blood, like ESR or CRP, but not always. Plus it can flare and remit, so you could drop back to normal during remission. If you are not HLA-B27 positive it would make it unlikely that you have a spondy, but not impossible. I think it really comes down to an MRI showing signs compatible with the diagnosis more than anything else, and t hat needed to have been looking in the right places using the right scan technique.

Ryan
 

wonderoushope

Senior Member
Messages
247
Hi @wonderoushope,

Tests like Rheumatoid Factor and Anti-ccp that are used for Rheumatoid Arthritis are not positive in spondyloarthropathy (its the reason why some refer to it as seronegative spondyloarthropathy).

It depends on the diagnostic criteria used but often there is some marker in the blood, like ESR or CRP, but not always. Plus it can flare and remit, so you could drop back to normal during remission. If you are not HLA-B27 positive it would make it unlikely that you have a spondy, but not impossible. I think it really comes down to an MRI showing signs compatible with the diagnosis more than anything else, and t hat needed to have been looking in the right places using the right scan technique.

Ryan

Thanks Ryan, that makes sense! Thanks for your advice much appreciated :) I will ask my GP about HLA-B27 test.
 
Messages
11
@ryan31337

Would you be able to message me please? I’m under the same cardio as you and have been referred for sympathetic microneurography with dr Serra, and wondered if I could speak with you about it?
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
I am new yes, it won’t let me message anyone either

Not sure how this all works!
@Ljcha1892 - @ryan31337 is right, brand new members don't have full privileges, but it doesn't take long to get them, generally after your first several posts you'll be granted full privileges, including sending private messages.

Having said that, I can set up a private conversation between you and @ryan31337 now. I'm relatively new to moderating so haven't done this before, but I know it can be done, so as soon as I sort it out, I'll set up the private message.
 
Messages
11
@Ljcha1892 - @ryan31337 is right, brand new members don't have full privileges, but it doesn't take long to get them, generally after your first several posts you'll be granted full privileges, including sending private messages.

Having said that, I can set up a private conversation between you and @ryan31337 now. I'm relatively new to moderating so haven't done this before, but I know it can be done, so as soon as I sort it out, I'll set up the private message.

I would be very grateful, thank you.