Does this sound like fibromyalgia ?

Linda76

New member
Joined
Sep 23, 2021
Messages
6
Hello everyone, I am new on here and representing my 77 year old husband who is not computer literate. Here is his story
Symptoms first started in July 2021, tingling sort of electric shock pains in both ankles, then pains in both calves, thighs, buttocks and hips. Also low back pain.
Very stiff after periods of rest. Always feels fatigued, and has anxiety, depression and brain fog. Feels woozy all the time.
Most upsetting symptom is a burning feeling on the skin on his chest and upper arms, feels like his skin is boiling, but it is not hot to the touch, no rash and his body temperature is normal. Then he feels cold shivery and shaky. He says his skin feels sore, like bad sunburn. This happens mainly at night but sometimes during the day too. He is unable to sleep for this symptom and has not had much sleep for months, consequently he is worn out, full of anxiety and crying all the time.
He has had telephone appointments with his GP (no face to face available at the moment due to covid restrictions) GP says fibromyalgia diagnosis is "controversial" and doesnt think it is that as he would "have pain all over". The pain he has is bearable if using pain killers.
He has had numerous blood tests and urine tests, all have come back clear. When I asked if he could be referred to a specialist the doctor said "but which one ??"
I have decided to get a private consultation with a rheumatologist to see if he can help.
Do you think this could be fibro ?? Any help and advice would be much appreciated. Many thanks !
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi Linda,

I'm so sorry to hear about what your husband is going through - and also that your doctor hasn't been the most helpful. These symptoms do indeed sound as if they could be fibromyalgia. It's certainly not true that fibro sufferers always "have pain all over"; while widespread pain is common, most experience more pronounced pain in some areas, and pain that can shift around the body. When one area hurts a lot, a dull ache elsewhere can be totally drowned out, so it's pretty nuanced and very individual.

Have a read up on Small Fiber Neuropathy. This condition can be a symptom of fibromyalgia, and can also develop on its own - sometimes triggered by diabetes, but not necessarily. I suspect you'll have an "aha" moment on those burning skin sensations. Also look into Alodynia, which can present as perceived temperature issues - among many other strange sensations - and is another fibro symptom.

Getting in front of a rheumatologist sounds like a wise call, as there is a better chance that they will be fibromyalgia literate - although this sadly isn't a certainty. Has your doctor run any tests to rule out other possible causes, or do you need to go through the diagnosis process in its entirety? It can be incredibly tough with something like fibro, because so many doctors are woefully uninformed about the condition. The best advice I can give is to persevere until you find the right physician.

I'd also recommend looking into fibromyalgia management strategies - a great place to start is Sunkacola's pinned post at the top of the General Discussion section of this forum - because making small changes to lifestyle and daily habits can make a big difference in alleviating the symptoms of fibromyalgia. Until you know for sure what's going on, none of these strategies will do any harm, but they might help a lot.

Do ask any questions you want to here. I wish you all the luck in finding the answers you need 🌷
 

Linda76

New member
Joined
Sep 23, 2021
Messages
6
Thank you for your very encouraging reply Jemima.
Small Fibre Neuropathy sounds very interesting ! He did start with pins and needles pains in his ankles and shooting pains up his legs. The main problem at the moment is this burning skin sensation on his chest and upper arms, I thought it must be hormonal as it mainly occurs at night, just after he has got into bed, but it has happened during the day too. Lack of sleep is not helping. It is so hit and miss, two nights ago he went to bed at 11pm and went straight to sleep and did not wake till 7.00am the next day. Then he said he felt so well that day. That night however it was back to square one, burning up and no sleep again.
The specialist we are going to see on Monday I chose because in his profile it said he specialised in all rheumatic conditions including polymyalgia and fibromyalgia. We live in the UK, so I have paid to see this consultant privately. He has had extensive blood tests and urine tests done by his GP, I am taking the results of those with me to the consultant. All have come back normal though.
Thank you so much for your support, and I will report back after having seen the consultant on Monday.
 

MsRant

Member
Joined
May 7, 2021
Messages
16
Reason
DX FIBRO
Diagnosis
10/2005
Country
US
State
VA
Hi Linda, and hubby, welcome.

I wanted to chime in, I originally had a doc that constantly told me.."it's just a virus" after 3 months of not being able to wake up and having all my tests come back clear, I got him to refer me to a diagnostician. Literally, all they do is find a diagnosis for people, especially ones with more difficult things like fibro. I would tell anyone having issues with a diagnosis to look into a referral. I was also lucky to be sent to one of the top in the country, so his opinion carried some weight with it.

Good luck to you both, it's a rough road.
 

Linda76

New member
Joined
Sep 23, 2021
Messages
6
Hi MsRant - thank you for your reply, here in the UK it is very difficult to actually see a doctor face to face nowadays due to covid. The consultant we are seeing tomorrow evening lists fibro as one of his specialities, so fingers crossed. Even if it is not fibro, it will at least rule out one possibility.
 

MsRant

Member
Joined
May 7, 2021
Messages
16
Reason
DX FIBRO
Diagnosis
10/2005
Country
US
State
VA
I'll be thinking of you and hoping for some good news for you. True, ruling things out can be as beneficial as not, and at least you get more direction. That at least makes us feel like we are getting somewhere, the unknown is a scary thing. I feel lucky that we are less restrictive, even if there are still too many stupid people; I appreciate being able to see my docs, even if I think they don't get it :p
 

Linda76

New member
Joined
Sep 23, 2021
Messages
6
Update - saw the consultant rheumatologist last Monday evening. He specialises in fibromyalgia. He said he does not think it is fibro. He was concerned about my husbands weight loss (1 stone in 3 months) so he is arranging a CT scan and further blood tests. Just waiting for those appointments to come through now. Will update when I can.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Best of luck to you both, Linda
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
754
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
He specialises in fibromyalgia. He said he does not think it is fibro.
Sounds like a good start. Maybe he'll change his mind if he doesn't find anything else.
My first rheum. said no it isn't, then I did lots of tests for 4 months and a 2nd rheum said yes it is... *sigh*
So lucky you've landed with a specialist (if he really is one and doesn't just say so...),
as I know shopping around isn't possible on the NHS, even without CoV.
 
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