Possible CRPS?

[Morganalefaye]

I was diagnosed with Small Bowel Crohn’s Disease in the early 1970’s and had 18” of small intestine removed. I was on steroids for a while, then codeine for diarrhoea. Later diagnosed with Bile Salt Malabsorption. When I was around fifty the joint pain which I’d always suffered from since childhood began to grow worse, until a few years later the pain in my spine was unbearable, and at the same time my Crohn’s flared again very badly, for which I was put on azathioprine. I had another bowel resection, followed by bi-lateral hip replacements because although I had spinal problems the neurosurgeon believed the osteoarthritis in my hips were causing most of my disability. I am currently on the list for a spinal decompression for L4/5 nerve compression.

Those things, I understand and can handle.

This is my problem, between the last bowel resection and the first hip replacement I dropped a chair on my left foot, it hurt for an hour then I forgot it. About a week later I began to have the most horrible pain I’ve ever had in my left lower leg ankle and foot, and was told it was either my arthritic hip, or the spinal compression. When it came to the hip replacement/s the surgeon wanted to replace my right hip first because it was by far the worst affected, but I asked him to do the left hip, because of the ankle and foot pain. I had the most horrific pain with that hip replacement, and it has never properly settled down. It was a very big wound, with many clips. My entire leg was red hot, swollen and very painful. I still couldn’t walk because by that time the right hip was fused and immobile, so eight months later I had the right hip replaced. No problems with that at all. Small scar, quick healing and I was walking within six weeks.

I’m now told that the right side of my spine is very much worse on the right than on the left, but I have little or no pain in my right leg and foot. Meanwhile, the left foot and ankle is virtually permanently very, very painful, and when it’s not, it’s freezing cold and grey looking. At times I can’t bear the weight of a light blanket on the foot. It often looks smaller than the right foot. I’ve also now got severe osteoporosis in the foot. I’ve only recently heard of CRPS. I don’t think the problem with my foot is entirely, or even at all, down to my spinal problem.

I’ve seen a rheumatologist, and a neurosurgeon and one of the neurosurgeons expressed doubt that the foot pain was directly connected with my back.

What speciality would deal with CRPS? Any recommendations for consultants who deal with CRPS?

I’m interested in any thoughts or advice.

Thanks for reading this long moan!

[cyberbarn]

Have you had your foot assessed by a podiatrist? There are also consultant podiatric surgeons that are the experts in all things below the knee. It might be worth trying to get a referral to a podiatrist initially for a podiatric assessment at the very least, as they may well be able to refer to a consultant podiatric surgeon.

As for CPRS (you are right to think that not all foot pain is caused by problems in the back, but equally CPRS isn't the only thing that can cause a lot of foot pain and sensory loss) Most areas now have a special pain management team. It sounds like you should ask your GP for a referral to the pain management service in your area, as they might also be able to direct you to the right person to get to the bottom (excuse the pun!) of this.

[Morganalefaye in reply to cyberbarn]

I’ve seen two podiatrists, as well as a consultant neurosurgeon and consultant rheumatologist.I actually don’t think we do have a specialist pain clinic in our area because one of my GP’s attempted to refer me to one several years ago, pre-pandemic, and was told they’d all closed down, The neurosurgeon says the pain is coming from my back, and the rheumatologist says it’s either psoriatic arthritis or CPDD.

[cyberbarn in reply to Morganalefaye]

I would try for a pain clinic again as most areas now seem to have newly set up ones. nhs.uk/Service-Search/other...

[Mitch48]

Hi there,

Can you describe the pain in your foot in more detail please. What does it feel like, where is it in your foot/feet. Do you sometimes do something & the pain starts or is exacerbated by something else?

I have had numerous spinal procedures during cervical & lumbar surgeries, I also have dreadful pain in my feet (amongst lots of other areas).

I may find a common area/s or type/s of pain.

Kind Regards,

Mitch

[Morganalefaye in reply to Mitch48]

The pain feels, variously, as if my whole foot is being crushed in a vice; freezing cold; it spreads up past my ankle joint at times; sometimes it seems to be in a specific area such as a particular toe, or my heel, but most often in my instep. I sometimes feel as if there’s things crawling about in it, or on it. Sometimes I can’t bear the weight of a lightweight woollen blanket, or even cotton socks on it, other times it itches, sometimes massaging it firmly helps. I can walk short distances without it hurting, other times I just can’t walk at all without unbearable pain. Sometimes I turn over in bed and a searing pain shoots through my foot. Sometimes the foot looks much smaller than the other, and grey and the skin looks shiny. I do believe that it is slowly getting worse.

A private physio told me recently that the foot is ‘turning in’. A couple of weeks ago I had acupuncture and the very experienced therapist used some type of ‘hot pen’ device on the ankle. The foot burned for three days. It was agonising.

Occasionally, just momentarily, I feel I can understand why people ask for feet to be amputated. Or I can fully understand why people commit suicide. (No, I’m not suicidal!)

I have got degenerative disc disease, and am awaiting a back decompression which I’m not willing to go ahead with until I’m sure that’s where the pain in my foot is coming from. I’m told the worst nerve compression is actually in the unaffected foot! I do sometimes suffer from sciatica, so I know what that feels like, but it is as nothing compared to the pain in my foot. I have got quite severe osteoporosis in the foot, and some say osteoporosis is painful, other doctors say it is not. The only place there’s a chance I may be comfortable is lying flat in bed, but sometimes not even then.

Whatever the heck it is, I wish it would go away! I’ve had it for eight years, and I’ve about had enough of it!

[Redzoo in reply to Morganalefaye]

hi morganalfaye

I have recently last year been diagnosed with CRPS in my hand and lower arm. I only banged it slightly. I see a consultant rheumatologist for mine.

I have other stuff I see various specialists for too

Although she is very knowledgeable and knew what it was straight away after months of seeing physio, orthopaedic, emergency ward, mri, x ray, my doctor thought she was god and was gunna fix it and basically because she took longer it’s now worse!!

In my experience (you have to have fibromyalgia/CFS/chronic pain before btw)

I don’t think it’s reynauds as it’s 1 side and you had an horrendous op on that side!

the pain/shooting/stabbing/pins & needles hotness etc etc will stay (so sorry!) but it’s a case of accepting that it’s now how this part of your body has changed. Don’t let anyone do anything to it like warm, hot, I would suggest no acupuncture at all. The best thing is to massage it GENTLY with oils like lavendar, rosemary etc, a bit of menthol if you can cope with it. Get some light compression socks made from a cool fabric. I think isotoner?! They may be called. The cooling pillow cases are good you could maybe wrap it in one at night to stop bedclothes hurting you. It’s the shock of bedclothes too that hurt so you’re better with something already secured on your foot/leg not tight and definitely not warm

Lots of trial and error I’m afraid on your part

Read journals with real medical pages about the subject

I’m 100% you have it, no one is sure, no one knows enough. It’s very rare and unless you get a specialist your stuffed

Oh my lady is a locum consultant at Calow Royal hospital (they could write to her for more info) H Sekyrynskaya

No specialist pain clinic as even the dedicated one in Salford just give you meds, cbt, and teach you distraction techniques same as every one else

hope this helps

J xx feel better soon sorry you’re so unwelll

[Morganalefaye in reply to Redzoo]

Thank you so much. You’re very kind. I’ve had it for so long now that I’m fairly accustomed to it by now. It’s just really annoying when your life becomes so curtailed, and it’s so hard to get answers. The smallest thing I do required hours of rest in order to recover. I seem to have been going around in circles for so long. I’m convinced most of the various medics one sees never really listen, and so everything takes much longer than it needs to.

[Mitch48]

Hi there,

I’m sorry that you are in so much pain & it must be frustrating when there is disagreement between doctors as to what is causing it.

I have freezing cold feet with Raynauds primary & have to wear thermal socks all year round - except if it’s really warm in the day then I can take them off. I also have it in my hands but they’re not as bad.

My ankles burn and sometimes feel incredibly cold, this is from irritated nerves L3/4 or L4/5 which were compressed for some time due to Impending Cauda Equina & Spondylolisthesis (2 vertebrae had slipped out of alignment over one another, making my spine unstable). I also had/have many symptoms pre/post surgery as those 2 rare conditions caused buttock & lower back pain, problems sitting, numb feet, lower right leg numbness, pins & needles in my legs, shooting & burning nerve pain, lightening electric shock type nerve pain, swelling legs too, etc. I also have mobility issues & use a wheelchair (mainly for shopping trips, days out etc).

I had to have extensive emergency lumbar surgery -

3 x Foraminotomies

3 x Laminectomies

2 x Discectomies

Interbody Fusion

I’ve had 9 knee surgeries with numerous procedures in each, culminating in a TKR & patella 2 years ago. I’ve also had less pain in one knee that scans show it’s more damaged than the other - but as we know, inflammation doesn’t show up on X-rays etc

What level/s are you having decompressed?

Regards,

Mitch

[Morganalefaye in reply to Mitch48]

Would you say your surgeries have actually helped you?

I have a Grade 1 spondylolisthesis too.

If you too experience ankle pain with back compression possibly my foot pain is coming from my compressed nerve/s at, (I think) L4/5. It just doesn’t feel like referred pain, plus some of the pain in my foot doesn’t seem related to my back problems. One of the neurosurgeons I saw didn’t think so either.

I’ve wondered about Raynauld’s

The rheumatologist noted that on X-ray I do have some indications of have psoriatic arthritis and CPDD.

I’m very reluctant to accept any treatment until I’m fairly sure what’s actually causing the pain. Surgery isn’t always the answer in my opinion.

[Mitch48]

Hi,

Definitely, if I’d not had the lumbar surgery then I could have become doubly incontinent & even paralysed. I know I have lots of symptoms but they could have become more in number & more severe - my leg pains are extreme at times, the electric shock pains are of a type that I never had pre surgery, they come on “unannounced”, are a 10/10 pain and I nearly always cry out when they start. I’ve had some pretty painful pain clinic procedures which have been 9/10 without sedation, Radio frequency ablation in my cervical spine was the worst & I’ve had it 5 times as it’s the best there is for my cervical radiculopathies at C5/6 & C6/7 (I’ve had ACDF’s x 2) I’m going to have it in my back but need the two test injections prior to that (Median Branch Blocks I think??).

I’ve been injured for 19 years following a RTC that wasn’t my fault, over the years my spine has deteriorated so badly from an initial disc prolapse at C5/6.

I totally agree that surgery is not always the best answer but I’ve found that it’s not offered when it’s not definitely needed.

My first ACDF didn’t work as the nerve was already damaged. The second one helped for a few months until an osteophyte grew compressing the nerve again. I had RA afterwards which helped such a lot but it wore off recently & now the cost of these treatments are prohibitive for me.

Fortunately I have found a neurosurgeon that has an excellent reputation, I trust him & have had a much better outcome from him operating on me than not doing so. I hope you can find a surgeon that fits your criteria.

Raynauds can easily be diagnosed by a Rheumatologist & perhaps you could see one quickly by a private consultation if possible. You do have other lumbar symptoms, so seeing another neurosurgeon for a second opinion could be highly valuable.

Regards,

Mitch

[Morganalefaye in reply to Mitch48]

I tend to think that the older you are, the less useful treatment, surgery, etc is. I’ve had two bowel resections and both hips replaced and they’ve all left me with other problems, not that I’m complaining because the problems I had before surgery were life threatening and completely disabling. I’m managing to live with all of the spinal problems at the moment. The neurosurgeon I see is also one of the best, as is the rheumatologist, but I do think that when one has several autoimmune conditions as I do, almost everything is put down to an overactive immune system.