In pain, desperate, need help - Severe foot pain and much more?

[TammySwansonTwo]

This will be long but I’ll try to be brief.

Was diagnosed with endometriosis in 2004, age 22. A few years later I was put on a drug that put me into temporary menopause for two years. Since that point, my health has gone down the toilet.

Started with loss of libido and terrible fatigue. Shortly after started with joint and muscle pain. Diagnosed with ME, ended up having to stop work a couple of years later. Been on high doses of opiates for the endo ever since.

Since my twins were born 18 months ago, my health has worsened significantly. Constant upper back pain with altered sensation across my back. Joint pain and weakness. Pain all over really. GP said it’s fibromyalgia. Rheumatologist won’t see me since I’ve been diagnosed with fibro already by the GP.

Six months ago I had a weird burning sensation by my knee. Over time it’s spread to both legs and to my feet. It comes and goes. A couple of months ago, my right foot became incredibly painful on and off, especially in the mornings. Right now the pain is so bad I’m in tears. It feels like all the bones in my foot are shattered but there’s no swelling or bruising.

Have had bloods taken many times for the regular things - Thyroid, ferritin etc etc. All come back normal. Have been fairly convinced for years that it’s my thyroid and I know it’s hard to diagnose but it doesn’t seem to be that (Tsh levels are fine but sometimes my FT4 levels are at the bottom of normal range). There are lots more symptoms but would be here all night (disproportionate weight gain, hair thinning, lack of concentration, forgetfulness etc etc).

GP is uninterested - anything I go in with is attributed to my existing diagnoses but this pain feels totally different. The same pain in my foot is now starting in my elbow / hands. I can’t just sit here and let my body disintegrate any more, it’s been 10 years since this started and I’m scared of how things will be in a year or two.

I don’t know what to investigate, where to go, what to ask for. Sometimes I honestly just want to die - I am not depressed or suicidal but it feels impossible to live like this. I’m already at the best practice by far in my area and the GP is well meaning but he doesn’t know what to do either.

If anyone recognises any of this, please let me know.

I reckon thyroid, in range doesn't mean it's fine. Ask for your thyroid antibodies to be tested. Also vit d should be above 80 and b12 should be over 300. Tell the doctor it is effecting the quality of your life and your family's life. If you say this according to nice guidelines they should act. Good luck x

I’ve been beating that particular drum for years. They just shrug at me.

I’ve paid for private thyroid blood tests out of desperation. The first one I did, antibodies were low, TSH was only 2, FT4 was at the bottom of normal range. T3 and T4 were lower end of normal range. I figured this was maybe pointing to a problem.

GP said he can’t do anything until things go out of normal range. Even spoke to an endocrinologist for me who said the same. I paid for another test a few months later and all my levels were much better (mid range)

Haven’t had other levels checked for a while so will ask for them to be repeated. Just feel like I’m banging my head against a brick wall.

Sorry - thank you for responding by the way! Really appreciate it.

Have you had your vitamin d levels checked? Deficiencies are m is yo cause joint pain like this.

Also, I was in similar poor shape after having my baby in 2012... I was even tested for lupus. Since then I heard heard this can happen after pregnancy

Also, please google plantar fasciitis, I had that when I was generally very poor health. Excercises with tennis balls can really help x

I have an autoimmune condition. My vitamin D levels were very low and I do feel better for taking supplements.
Also have terribly painful feet and severe osteoporosis.
I have gone up a size in shoes and can only wear extra wide. So only crocs and hotter boots for me now.
I am on a cocktail of immunosuppressants, but I take fish oil, vitamin B complex and vitamin D3 daily.
I don't know if any of that would help you. Just wanted to send you a virtual hug. It is horrible feeling so ill when the only response from hcps is a shrug and advice that nothing can be done.

Thanks everyone. I’m pretty sure it’s not plantar fasciitis- no pain in my heel, it’s mainly the long bone on the outside of my foot that hurts. Definitely feels like the bones hurt if that makes any sense!

Will try adding in more supplements, thank you

Sorry you're having a rotten time. Is there another GP in the same surgery you could see? You could ask if they've already checked your rheumatoid factor, and what about hormones? The menopause can cause a lot of these symptoms too (check out menopause matters website). The other posters are correct about vit d levels, I've been taking supplements for a few months now and can actually feel an improvement in my mental health (which is generally fine but getting fed up of being in pain all the time, and the shit weather we have). Have you kept a food diary to see if there are any foods setting it off? I find avoiding wheat and MSG helps.... (dorito's crisps and pizza are worst for me). Recently my rheumatologist did a blood test for lupus which I'd never heard of, and it came back raised. I've been diagnosed with RA over 15 years ago, but was almost fine on no treatment until 2-3 years ago. More recently the rheumatologist questioned the diagnosis, changed it to sero-negative arthritis, and now they're considering lupus... What I'm trying to say is that sometimes even the Specialists struggle to diagnosis correctly.

Sounds like you need a sympathetic GP, and a fresh set of eyes looking at your symptoms. Fingers crossed you get more help soon... And that our weather improves!

Oh, forgot to ask if they've sent you for any xrays of your hands and feet? Any family history that may be relevant to your symptoms?

Thank you. The GP I see when I do go (don’t bother much these days) is definitely the most sympathetic of the bunch. He does seem to want to help, but doesn’t know how. Often asks me what I would like him to do - I don’t bloody know. I just know this cannot be normal and I’m not willing to write off increasing pain as fibromyalgia when we don’t know that’s what it is.

I asked him to be referred to a rheumatologist- he happily agreed. I received an appointment and then the rheumatologist wrote to me saying he was cancelling my appointment because I’ve already been diagnosed with fibro so he couldn’t do anything for me. I was hoping the rheumatologist might have some other ideas or want to run some tests or something.

No family history that I know of. I do wonder if the two years on the menopause inducing drug has affected my bones, but I had a shocking fall a few years ago with horrendous bruising and swelling of my ankle but X-rays were clear - I’m sure if my bones had thinned I would have broken something then.

I haven’t had my foot xrayed, it’s just been assumed it’s down to the fibro. I think I need to go back and push for more. I’ve been outside three times this month, thats it. It’s massively debilitating and I’m not even under any consultants, just left to get on with it really.

Your treatment has been good enough, you need to go back, take someone with you and insist on a referral to specialists and have everything tested that can be tested for.

The pain you describe sounds like arthritis which there are treatments for.

Also, and I'm not saying this to scare you, but to encourage you to go back to the gp and be pushy, my dad had severe foot pain, which he repeatedly kept going to the gp about and it eventually turned out it was Hodgkins Lymphoma (cancer of the immune system), it went undiagnosed for over 12 months, and he sadly passed way the following year. I don't think for one minute this is what you have, but it's when you hear stories like my dad's (and I hear stories like this far too often) that makes you realise that you need to be really pushy to get the appropriate healthcare sometimes.

Meant treatment HASN'T been good enough, sorry.

Regarding the thyroid and your doctor stating that he cannot do anything until it goes out of normal range. I had the same issue with my doctor and got the same response until I made the point that normal for me may not be the same as the range. I had all the same symptoms but classed as very low normal. He reassessed and put me on a low dose. Symptoms improved.
I have gotten worse since and the dose increased but the point is valid.

What is normal for you may not be normal to everyone else.

Hi Tammy, I've had fibromyalgia for almost 20 years now, and a lot of what you have said here is really familiar with me. It sounds horrendous what you have gone through, and like yourself, mine manifested itself after a major accident - I feel like I've been 'rewired'.

I describe my Fibro as a 'shape - shifter' , as no two hours are the same. However, alongside that, I have found that over the years, changes have occurred - almost like a creeping takeover, and will probably continue to do so throughout my whole body for the rest of my life. I accept that - without giving in to it.

It's no coincidence that since you had your twins that your back, elbow, hands etc have worsened. You will have been picking the twins up, carrying them around, pushing prams and more. All of which will constantly add and build to the physical stress your body is already under.
The same is probably happening with your foot, elbow and maybe other areas too.
I have the same problems - almost exactly, and can only say what I THINK it is and what works for me. .......

Muscles attach at each end via tendons that grow out of one bone and into another, acting like levers and pulleys. Therefore they're under stress already unless at rest. So massage and gentle stretching exercises are the way I go.
Every morning I massage the muscles above/below my elbows. I do the same with my neck, hips, knees, shins, and feet. Once a fortnight I visit an osteopath who works my upper back as I can't reach this.

If I develop (usually in my arms/elbows due to work) a sore/painful area - like your foot, as I sometimes do - I massage it like any other area using a little moisturiser cream for a few minutes. It may turn red, it may even bruise and be sore for a day or two after, but the relief is immense. What you say about 'broken bones' in your feet really resonate with me - especially after a long day.

I do very gentle stretching excercises each morning too, as the Fibro tends to make the body 'curl up' to alleviate any discomfort, so this has to be 'pushed back' as it were - Ifeel I need to stay as loose as possible.

The burning sensation you describe is familiar to me too. I get it in my hands, feet, thighs , or sometimes it goes the other way with tingling, numbness, and a sensation of my skin crawling around my body.
There is growing discussion that the nervous system is strongly connected to Fibro', and I fully support that theory - that is just my belief - but it does explain the burning/tingling etc.

Oh, and re your GP/Rheumo, it's the same for me, I feel labelled and written off by them, so I now go my own route and do what works for me. I hope you can find your way through all of this too.

Thanks so much everyone. Called and made a GP appointment for two weeks time but not with the GP I usually see so pretty sure it would be pointless to try and get into everything with her. I will ask for some more blood tests at least. I keep wondering if I maybe have a stress fracture or something but surely there’d be some swelling or bruising if it were an injury.

I’ve been flogging the thyroid horse for years - they’re not interested. I’ve tried explaining it every which way, printed off the research I’ve done, everything. Seriously considering trying to find an endocrinologist who is willing to trial treatment on the basis of symptoms or buying NDT from abroad and trialling it myself. Like I say, I’m desperate at this point.

Pea I’m so sorry you’re dealing with the same stuff. Thanks so much for the tips. I’ve been trying volatrol gel on my foot but it’s not helping. I’m already on morphine so the pain must be bad for it to be affecting me this much.

Psoriatic Arthritis can present like this in the feet and it frequently doesn't have raised inflammatory markers either. It's the tendons rather than the joints so think, golfers/tennis elbow, plantar fasciitis etc. My feet can feel like they've been smashed with hammers on top and below.
I do hope your Gp refers you to a rheumatologist because fibro should only given as a diagnosis when everything else has been ruled out. And the Gp can't access usually all the bloods and isn't in a position to diagnose a specialty!

It’s tough as the GP was happy to refer me, it was the consultant who refused the referral because I’d already been diagnosed with fibro (or rather the doctor saw I was diagnosed with ME years ago and said the pain is fibro because they’re basically the same thing). Isn’t this supposed to be a diagnosis of exclusion?!

It could be they're trying to put you off then. There's a shortage of rheumatologists and some people are waiting a year to be seen in clinic. Have you looked at your local or preferred hospitals website? If not have a look and see. I chose to go out of area to a better hospital and my treatment has been second to none but it was a complete ball ache getting to be seen.

I’m considering finding the money to see someone privately. Not sure else what else to do at this point!

Google “trigger point therapy”. A lot of pain is caused by trigger points in muscles but you can treat it yourself. All you need is a tennis ball. I have joint hypermobility syndrome and slipped discs and arthritis in my spine. I was also diagnosed with fibromyalgia and also get told that any new pain is “just the fibromyalgia”. It is really annoying. I am sceptical of whether fibromyalgia even exists. It seems doctors just tell you you’ve got it so they don’t have to do any more investigations. The other day I had a horrible grinding sensation in the base of my spine, and back pain when I put weight on my left foot. Rheumatologist (private) said it was just fibromyalgia. It was actually caused by several trigger points in my glutes which I fixed myself with a tennis ball against the wall. Now pain free there.

I also would get a full spine MRI if I were you. Pain from there can refer down your arms and legs. But definitely look up trigger points. There’s loads online. If it’s helpful there is also a really good book called “the Trigger Point Therapy Workbook”.

Thank you. I will check that out. The back pain started when I was pumping and hunched a lot. I now have a 5” strip across my back that has altered sensation. I had physio for a while but it didn’t help much. I will definitely try the trigger point thing.

I alternate between being too tired to fight any more and desperate for more help. Sat here googling sources for thyroid meds. I just want to try for a month and see what happens. If no improvement or have any bad reaction I’ll obviously stop.

Some classic symptoms of hypothyroidism and vitamin B12 deficiency here.

If you can chuck some money at this, you can get all the tests you need done privately as NHS are often reluctant and, for example, only test one sort of thyroid antibodies.

I had fibromyalgia too. Fixing my thyroid problem and optimising vitamin and mineral levels fixed that as well.

Sounds like trigger point therapy would help a lot, definitely with the muscle pain and probably with the other symptoms too. If you have a lot of trigger points it can make you very tired as your muscles aren’t functioning efficiently. I have loads and they need keeping in check otherwise I feel dreadful. Physio will generally give strengthening exercises first which won’t do much good until the trigger points are sorted.

Have you considered going to see a chiropractor?

I’ll definitely look at trigger points. I haven’t been to a chiropractor yet, no.

One quick question - I have an extremely painful spot on each leg, a couple of inches higher than my ankle on the inside, along the side of the shin. If I bash it or one of the boys presses it, it’s insanely painful. Does this sound familiar to anyone? Not sure if there are trigger points there, will look it up.