Do I have Fibromyalgia, Allodynia, Hyperalgesia, or something else? No Doctor/specialist seems to know...

[journey50]

Hi everyone,

Hope you’re all well and keeping safe

I'm new here and have spent some time reading everyone's questions and comments.

I am reaching out to the community to see if anyone can help me with my issue which I've had for approximately 3.5 years at the time of writing (Sept 2020).

I will try and summarise it:

1. In February 2017 I woke up in the middle of the night with an excruciating pain on my right shin. On a scale of 1 to 10 with 10 being the most severe, it was a 10.

The pain lasted about 45 mins. It suddenly appeared out of nowhere, very sharp, and lasted a few seconds, disappear, then a few seconds later the same pain, and this repeated.

I’ve never had this pain before. It feels like a sharp stinging pain, not dull.

2. From then on, I would regularly have pain in that same area, sudden, no warning, sharp stinging pains, not the same level as that initial episode but still painful, around 7/10.

3. In April 2017 I noticed in the same area where I was having the pain now had a small bump. Nothing on the outside, and you could not see anything if you looked, but if I rub my finger over it, I could feel a bump. I went to the doctor who said it was a pimple and would disappear in a couple of weeks. I explained my situation etc, but this was dismissed.

4. A month later, the bump remained, but the area had also darkened slightly

5. Fast forward to the end of 2017, I still have regular sharp stinging pains, the area is raised, the skin is little darker, and now the area has recently become sensitive to touch. A simple blanket touching the area, or fabric, any sort of touch can cause an immense amount of pain.

6. At this point, the doctor finally referred me to a nerve and vein specialist.

7. Fast forward to today (Sept 2020), over the last 2.5 years I have seen two nerve specialists, a vein specialist and a dermatologist, had an MRI and an x-ray on the area, also my back as one of the specialists wanted to make sure it wasn’t an issue coming from there, and several different tests to check my nerves and vain. The specialists all said the rests came back with no abnormality and they don’t know what the issue is.

8. Meanwhile, the sharp stinging random pain has gotten more regular and disruptive, waking me up a couple of times at night a week, and is daily occurrence each day, the pain level being around 7/8. The area is more sensitive to touch than ever, and the raised and dark skin is still there. The original excruciating pain that woke up me in Feb 2017 has happened a total of two times in the last 3 years.

I have recently been prescribed lycodine cream and lidocaine medicated plaster, both have not helped.

I have googled what I can, and no one seems to have what I have. People have the sensitive to touch issue I have, but not the random pain when there is no touch, which isn’t fibromyalgia as that is meant to be all over your body.

From what I read it could be a form of Fibromyalgia, Allodynia or Hyperalgesia, but no one seems to know.

Has anyone had symptoms like mine?

Any help is appreciated, the pain is affecting my daily life and mind, and no doctor seems to have an idea what it could be

The area is not itchy now has ever been, I've never had a rash, it's not been swollen or flaky, and I have not had an injury there.

I have never been on medication, nor do I have any health issues. I'm at healthy weight, and exercise regularly. I have been taking multi-vitamins for 15 years.

It's very difficult to take a picture to show you the area and to see how that is darkened unless looking with the naked eye, however I have added the best photo I can. I have plucked the hair out in the area to give a clear view.

Thanks in advance

[Hidden]

Can we see it ? So many people on here you never know

A pic might help. Sometimes things travel have they tested for circulation in that leg? I’m guessing yes ? Do you have health conditions

[journey50 in reply to Hidden]

Thank you for your reply

I have added the best picture I can, it's hard to see the issue in a picture but this is the best I can.

They have tested circulation, no issues they can find. I have no health conditions,

[Hazel_Angelstar Administrator FMA UK Staff]

Hi, as the main is located only in one localised area of your body it is unlikely to be fibromyalgia.

Fibromyalgia pain is widespread and affects the whole body

[journey50 in reply to Hazel_Angelstar]

I was wondering about that, as per symptoms I seem to have part of what Fibromyalgia is, but no it's not all over my body.

Any idea of what this may be?

[Hazel_Angelstar Administrator FMA UK Staff in reply to journey50]

Unfortunately not.

[journey50 in reply to Hazel_Angelstar]

No problem, thanks for your response

[Hidden]

Were you checked for Lyme disease ? There’s a few diff ones I didn’t know about maybe check on that. How is your diet and stress? I have psoriasis autoimmune disease disorder. Maybe your inundated system is just low it sounds like it. It could even be your diet too. Try taking extra vitamin b6. What other meds are you on?

[journey50 in reply to Hidden]

I've not been checked for lyme disease. When it started 3 years ago my diet was healthy, stress levels low, and stayed like that pretty much last 3 years, with the occasional bouts of stress everyone incurs. I'm no other medications. I have been taking B6 along with other vitamins daily for about 15 years. My weight is healthy, I'm fairly fit and exercise regularly

[fibo]

So sorry I understand the only thing I can say is, It doesn't sound like fibro it does take a long time for them to diagnose these things I was in in excruciating pain down the pelvis for 10-years then my feet and legs joined in so 12 years on I was diagnosed with fibromyalgia.. Two years ago fatigue was bothering me so was sent to the fatigue Clinic was diagnosed with ME.. On Investigation it I may have had it since I was 15 when I had glandular fever I am now 63..

[journey50 in reply to fibo]

wow, how are you coping with all that? What is ME? Useful information, so it could be fibro for me but too early to tell

[Hidden in reply to journey50]

I have me too and fibro it started after an infection plus I have autoimmune disease I suspect it got triggered by viral. Yours does not sound like ours. Mine did not start like that it could be autoimmune but different. My immune system changed after fertility drugs then the ME after a virus I had underlying immune genetic dormant

[2pods]

Venomous Insect bite ?

Quite a few False Widow spider bites happening this year.

[journey50 in reply to 2pods]

Maybe, but it's been 3.5 years since it started

[2pods]

Probably not then. Sorry.

[MariLiz]

There is a condition where a tumour called a Schwannoma forms on a nerve, and it is excruciatingly painful. My daughter in law’s father has had surgery to remove two of these, one from his shin ( where yours appears to be) and another from his shoulder. It is relatively rare, and many doctors won’t have seen or heard of it. Maybe see if you can get a referral to a nerve specialist?

It can be diagnosed with an MRI scan.

[journey50 in reply to MariLiz]

Thanks for that MariLiz, I've just read up on what you have said. Never come across it could be that. Only thing is I have seen two nerve specialists, and had an MRI. The MRI showed nothing out of the ordinary. May I ask what country you saw your nerve specialist ?

[MariLiz]

He saw someone in London for the surgery, but lives in Devon now. I think that when the one on his shin was diagnosed he was still living near Marlborough. For the shoulder one he was living in Devon, but they wouldn’t contemplate doing the surgery locally. I gather it’s very specialised.

The shin one began after an injury, and he just thought it was taking a long time to heal. Have you injured your leg before all this began?

[journey50 in reply to MariLiz]

No injury beforehand, just out of the blue

[MariLiz in reply to journey50]

I’m sorry, I don’t know what else to suggest. If you’ve had MRI scans, then a Schwannoma ought to have been detected, if that’s the cause of the pain.

It’s very frustrating to have something like this, when nobody seems able to diagnose it, or find a solution. I can empathise, as I had four years of ongoing abdominal pain. Three hospital admissions, several courses of antibiotics, two investigative operations , before it was discovered that my appendix was causing the problem!

[journey50 in reply to MariLiz]

It seems it does take a long time and lot of investigation to find out what something may be

[MariLiz in reply to journey50]

The real irony was, my GP had sent me into hospital initially with suspected appendicitis!

Hospital, in their wisdom, decided no!

[Missspringsummer]

You should see a specialist in infectious diseases, even if you haven’t been abroad. You can pick up this kind of thing anywhere without noticing symptoms straight away,

[journey50 in reply to Missspringsummer]

Willing to try anything

[Mary-intussuception]

I don't know but -

Why are you taking multivitamins?

Shouldn't vitamins only be taken if a blood test has revealed a deficiency?

Did you tell all the Specialists that you are taking them?

What doses of the fat soluble vitamins are you taking?

Have you requested a blood test to check your level of Vitamin D or any other nutrients levels?

[journey50 in reply to Mary-intussuception]

i don't know if vitamins should only be taken if a blood test has revealed a deficiency. Yes the specialists know. Not sure on doses of the fat soluble, but each vitamin is about 50-100% of the recommended daily allowance. I haven't requested a blood test.

[Mary-intussuception in reply to journey50]

I thought you were eating a healthy diet so why would you take multivitamins? Do you have an absorption issue due to, say - a bowel disease? As you don't take a PPI (Proton Pump Inhibitor) such as Lansoprazole?

Do you also eat breakfast cereals? As most of these are fortified.

Do you take multiminerals also?

I noticed in another reply that you say you take an additional B6 supplement, may I ask why? I believe it's commonly thought that all the B vitamins are water soluble, however B6 is not. How much are you taking?

You may be interested in Googling : Vitamin B6 toxicity and/or Adverse effects of too much Vitamin B6.

It might be just coincidence but , strangely, one if them is :

painful skin lesion!

[KnackeredKaty]

Vitamin D has helped my weird severe pains. I read your question twice to see if I could help and then remembered that pain in my index finger started like that. The pain was excruciating as though someone was bashing my finger with a sledge hammer. I had it removed in March. The orthopaedic surgeon thought it was a ganglion, but when he cut open my finger he said it was a fibroma. I didn't have any skin discolouration but since surgery I don't have any shooting pains. Ask your GP to refer you to an orthopaedic surgeon or check it out in Google first.

[journey50 in reply to KnackeredKaty]

Was your finger very painful when touched? I've just read up on it, I don't seem to have any symptoms associated with it, though from what I can read online there seems to be different interpretations of what it is

[KnackeredKaty]

If I knocked my finger even slightly, the pain was horrendous. If I touched it or when the dr examined it before surgery, it wasn't painful at all. Weird.

[jodieshock]

Hi , it sounds similar to the pain I get in the top part of my right leg - usually at night. Burning\stinging and sharp. But I don’t have the bumps or darkening of skin. I have Fibromyalgia, M.E., Arthritis and pernicious Anaemia. Have they checked your B12 levels, as this can also cause nerve pain. 🦋