Symptoms worsening ?

[Queen-sab]

The docs have recently mentioned fibromyalgia after numerous blood tests, I think my condition is mild after reading people's condition. Does the condition get worse over time? I currently suffer from a burning sensation on the balls of my feet, numbness in the hands, joint pain in all over my body, stiffness in my shoulder etc

[Mary-intussuception]

Do you know what blood tests you had? Any nutrients levels checked (in particular B12, Folate, Ferritin, Vitamin D and Calcium? ). Did you have Thyroid function tests? Were Thyroid Antibodies tested (TPO and Tg)?

[Queen-sab in reply to Mary-intussuception]

I've had thyroid, menopause hormone, RF factor. I have low vit D

[Mary-intussuception in reply to Queen-sab]

How low was Vitamin D? Are you being treated by GP with prescribed Vit D supplements for Vitamin D deficiency or insufficiency?

It's helpful if you can get copies of your blood tests results including the normal reference ranges and any comments.

Also look up symptoms of deficiencies in each of these nutrients on NHS choices & other sites. Check out NICE guidelines for treatment of Vitamin D deficiency.

People can have other conditions as well as Fibromyalgia. Some treatable, in which case there could be relief to be had from some symptoms if not all.

I was told by a Rheumatologist in 2010 that my 'Thyroid's OK '. He diagnosed Fibromyalgia. However

1) My Thyroid is not ok. The tests he did - only TSH and T4 came back just within range. But I had Hypothyroid Blood results in 2008 I hadn't previously been informed of.

2) Decades earlier, I was told by a hospital doctor that I have Fibrositis. The old term for Fibromyalgia !!! Old news!

I actually have Hashimoto's Autoimmune Thyroiditis & Hypothyroidism but wasn't formally diagnosed until late 2011.

With Hashimoto's, the usual Thyroid function blood test results can fluctuate. So it's a good idea to ask for Thyroid Antibodies TPO and Tg. They would be more reliable to eliminate or confirm Hashimoto's, which is the cause of Hypothyroidism in most cases.

Do you have any arthritis in the neck?

It may be worthwhile looking into the nutrients more. Just in case you have any other deficiency that needs to be addressed.

By the way, In April this year I found out that I have Folate deficiency Anemia and Vitamin D insufficiency which are now being treated. I learned about asking for the tests on HU's Thyroid forum.

[Queen-sab in reply to Mary-intussuception]

Thank you for your lengthy response. It's a comfort that there are people out there who understand. Most people think im taking the mick when I tell them about my potential condition (nnoy been confirmed)

My vit d was 35, they prescribed 2 tablets at 20,000 for 7 weeks and then 1000 everyday. Been taking them but it's not made any difference, intact it is worse. I am taking lots of supplements. I have have been to a podiatrist too who has confirmed that the arthritis in my big toe has restrictive flexibility. My shoulder (left) is very stiff. I am actually waiting for physiotherapy on it .

[Dizzytwo Moderator]

Hi welcome to our lovely group If there is a Fibro progression it does not happen over night or weeks/months. Imo and going on my 30+years of experience it can take years. For some it remains the same and for others there can even be improvement even though there seems to be no cure at the present time.

Fibro effects us all differently. We don't all have the same symptoms. So it's hard to say yes it's progressive just my opinion Xx

Momo

[falling2peices in reply to Dizzytwo]

Agreed I’m going on 19 years and all though they say fibro doesn’t progress i believe that to be true but it seems in my experience that other illnesses seem to come along as years pass is my health and pain worse heck yes but it’s due to other illnesses now dose it happen because of fibromyalgia idk but i was healthy before fibromyalgia

[Hidden]

I think it's a goid idea for you to check your blood results ( ask for a copy, rather than just be to,d they're all 'normal')

Drs will often describe a blood test as normal when you're at the bottom of the range. In particulate check B12 ( deficiency can cause numbness, pins and needles, dizziness, brain fog) Folate, Ferritin and Vitamin D.

[Queen-sab in reply to Hidden]

My docs are good, they will tell me the value. I am waiting for my neurological specialist in early January.

[kimar in reply to Hidden]

Agreed. I always have them give me copies of my results then i scan into my computer.

[Mary-intussuception]

You've been referred to Neurologist? By GP or Foot Doctor?

So Peripheral Neuropathy is suspected?

Do you have any Arthritis then? In the Lumbar Spine as well as cervical spine. Have you been referred to Neurologist for MRI scan?

[Mary-intussuception in reply to Mary-intussuception]

It may be different in different parts of the UK but as far as I am aware it is Rheumatologists that diagnose Fibromyalgia not Neurologists.

I've been hoping for a Neurologist appoinment for years. But not pushing for it at the moment.

I've only just seen all your replies.

Yes, your Doctors seem good as they have presrcribed you with the Vitamin D loading dose, split over 7 weeks and kept you on a maintenance dose.

I don't understand why you are taking loads of supevents though, if you've only been diagnosed with Vitamin D deficiency so far.

Too many of certain supplements might be harmful.

I have Arthritis in my Right big toe! It keeps going numb. Funny thing is, I don't always realise until the numbness wears off !!!

You possibly have multiple conditions rather than just one or two. Lime me and many others on here. You could have Arthritis in neck as well big toe. Could also have Fibromyalgia. Thyroid problems won't be ruled out unless you've has ALL the tests including the Antibodies. I couldn't list all my conditions on here as they don't fit on an A4 page any more and besides, it would take me all day !

Have you been prescribed ibuprofen gel for your shoulder.

Hope your physio helps.

[Queen-sab in reply to Mary-intussuception]

Hi, I have been prescribed ibuprofen gel and use it on my shoulder, hands (thumb joints when it hurts). I was referred to a neurological specialist because I get numbness in my hands when I an asleep. The supplements I take are vit c, vit d, turmeric powder, vit k, b12 and complex, cod liver oil .

[Mary-intussuception in reply to Queen-sab]

Sorry

Saw this reply since last one and then our Internet went down!

Was curious as to why you are taking Vitamin K. Who prescribed it GP ?

[Queen-sab in reply to Mary-intussuception]

I take vit k because it helps the vit d uptake, googled it

[Mary-intussuception in reply to Queen-sab]

May I ask what dose Vitamin K you are taking and how often?

[Queen-sab in reply to Mary-intussuception]

I've been referred to the neurologist by the doctor. I have arthritis in my big toe only confirmed from an x-ray, I think I have it in other places. I think the neurological specialist will hopefully do the relevant scans. My app is on the 2nd of Jan.

[Mary-intussuception in reply to Queen-sab]

Good . Knowledge is everything. I think it helps to know what we've got , then we can find out as much as possible about our conditions and accommodate them as best as possible. I find drinking lots of water, eating healthy diet, gentle exercise, distraction and keeping positive helps.

[DanielleGemma]

It depends who you ask hun - Doctors will say it isn’t progressive but a lot of sufferers will say it does! I personally didn’t suffer too badly in my first few years and it’s only recently it’s got worse but as MoMo says it doesn’t just happen over night; you have to roll with the punches and take the good days when you get them and prepare for the bad days when they come xxx

[falling2peices in reply to DanielleGemma]

Exactly

[Mdaisy]

Hello Queen-sab

As DanielleGemma said the research considers Fibro not to be a progressive illness but many members feel it is. However, reasons for this could be due to many variables ie age, other conditions, trauma, bereavement, viruses etc and may not be directly down to the effects of Fibromyalgia in some cases. Without further research I think this question seems to remain debatable by many people in the Fibro community.

You may find this poll about this subject and it's comments of interest;

healthunlocked.com/fibromya...

I would suggest keep using many different approaches to hopefully work at lessening your symptoms and take it day by day

Hope this helps

Emma

[kimar]

Hello Queen-sab, not sure if it gets worse but it can change or move from hips to neck etc. I have also experienced the foot sensations you describe. I hate the foot numbness most.

[Valerie1]

Everyone has different levels of pain, fatigue, insomnia etc. Generally we can have flare ups due to any type of stress, emotional or physical; like an infection. We all try to manage our fibro in ways that suit us as an individual.

I’ve been diagnosed about 10 years and early on I realised that there are those whose condition is much worse than mine, but that doesn’t mean I’m going to end up in the same situation as them. I decided to deal with me one day at a time.

Some people refer to the condition having stages as a way of being able to rationalise it. However, in reality there are no ‘stages’ of the condition when you read up on it. It’s just that some people have more pain than others.

I have a simple life style, I don’t make work for myself to keep up appearances anymore. (Like I don’t iron more than I absolutely have to and I only clean when I can see a clean through is necessary.

It’s important to pace yourself, say no if you think something could be too much. Reduce the late nights and cut back on alcohol, dress comfortably, especially the shoes.

Lastly it’s only a day at a time, don’t think about how bad you could be in the future because nothing is certain. Good luck. x

[Queen-sab in reply to Valerie1]

Thankyou for your response, I wanted to be refered to a pain clinic but need a confirmed diagnosis. I am in the system (neurologist and rhematologist) so hopefully they will find out what I have.

[Cig12002]

Hi all new to here. I’m not entirely sure what my diagnosis is. My dr just says muscularskeletal. I have looked into it a lot and forgive me if I’m wrong it said firbo is connected to it. I have suffered for 5 years now. I have had every test under the sun. Blood tests, ultrasound, X-rays, ct scan, mri scan. I also had a laparoscopy which they found nothing as they suspected it was endometriosis as my Mum had this bad. My grandad suffered from chrons disease. I have a curved spine from birth. They have found lymph nodes on my t section of my spine but say everything is ok. I suffer with left back pain, left rib pain. I find it hard sitting on a chair or standing up for too long. My pain has got really bad. Now I loose feeling/sensation in my left foot and left leg. I have a lot of pelvic pains. My pain is so so bad when I am on my period. I can’t move. I have started to get a few twinges on my right rib/back area and in my right foot. I just feel like I have no answers and just suffered for years. I feel like no one believes the pain I’m in. Especially my family. They think I am putting it on. Any information or advice would be gratly appreciated. Such as how do you get a proper diagnosis. Anything you think I need to do or push for.

Thanks in advance

[Queen-sab in reply to Cig12002]

I have numbness in my hands and told the docs - they refered me a neurological specialist. I also have joint pain and being referred to a rhematologist. I find asking (telling) them that you want to be refered is the best way. I have paid my taxes and expect a bit of comeback now my feet hurt too so was refered to a podiatrist.

[Mary-intussuception in reply to Cig12002]

Hello Cig12002

May I make a suggestion? If you put this in again as your own post, it will be seen by others.

You could post on this community and also on Pain Concern for examples.

If you know what blood tests you have had and can post any results with dates of tests and normal referance ranges in brackets plus any comments added by lab or doctor also.

x🐥

[Hidden]

I really don't know if fibromyalgia progresses or maybe it's because being older and not as physically strong as l was at 25 is the reason why l now find the pain intolerable most days.

I was found to have Vit D deficiency also and now take a one a day over the counter Vit tablet.

Also recent MRI scan shows congenital Bilateral Coxa Vegus hip deformity which has probably attributed to lifetime of hip pain.

It is a constant battle managing the pain and the exhaustion that accompanies it...

I must add though that l am unable to take the medication that has been offered me is pregagabtine ,gabapentin and amytrpaline because all had an adverse effect on my heart.

Through all this l really am grateful and thankful to be still alive and count my blessings each and everyday.

Carol