Could it be fibromyalgia?

[Seahorse76]

Hello, I apologize for my long post😅.

I am in my thirties and have Raynaud’s disease, “had” Hashimoto’s thyroiditis ( but apparently gone according to latest blood tests) and was diagnosed with CFS 9 months ago. I am wondering if I could have fibromyalgia as well based on my symptoms and the fact I tested positive with ana antibodies: 1:160 with homogeneous pattern. However negative for ds DNA test ( one of potential lupus markers.)

My main symptoms: very sensitive to loud noises and very bright light, have been dealing with episodes of flu-like illness : always starts with an increase in anxiety the day before and then generalized muscle aches and weakness, headache, intense malaise, brain even more foggy than usual, extreme lethargy, no appetite, etc), that have increased in length and severity over the years ( from 2-3weeks length 2years ago, now last between 5-6 weeks each time and this happens 8-9 times/year.) I also suffer from low-normal range ferritin (27), depression and severe anxiety as a result. I also woke up with pain in both wrists yesterday and the fingers in my left hand were slightly swollen last night. My entire left arm and wrist are sore today.

Haven’t been able to work for a year and a half due to re-occurring symptoms. Do those symptoms look similar to fibro? One doctor thinks I have fibro but another leans toward a lupus diagnosis. I have been referred to a rheumatologist but it will take 4-6 months before I see him and in the meantime trying to see more clearly what I could have. Thank you so much for reading me 💛

[Hidden]

Hi

I'm so sorry you are not feeling too good. It does seem like it could be fibromyalgia but I have a friend who has fibro and lupus so I think the best is for your Dr to see if he can push for you to be seen sooner. Please let me know how you get on. Please take care of yourself Lynne

[Seahorse76 in reply to Hidden]

Thank you so much for your reply Lynne, I really appreciate it 💛. I hope that you aren’t in too much pain with the fibromyalgia. My husband is supportive so I am lucky. I will let you know once everything starts to make a bit more sense and I get a definite diagnosis. Hugs Aline

[Badbessie]

Your symptoms could be due to a number of conditions and as a general rule a diagnosis of fibromyalgia is not given unless other possibilities have been ruled out. There are no blood tests for fibromyalgia as such except negative results from the tests. Your need to remember that bloods can sometimes give false positives and negatives and cannot be totally relied on .

[Seahorse76 in reply to Badbessie]

Thank you for your message, Badbessie. Yes, you are right you can’t just assume you have a specific disease based on blood tests alone. I will probably get a better picture once I talk to the rheumatologist and explain all my symptoms.

[Ansteynomad]

Hashimoto's doesn't just 'go'. It's a lifelong condition. Also, your ferritin is way too low. I'd start there to be honest before you go down the fibro route. It might be helpful to post on the ThyroidUK forum on here.

[Seahorse76 in reply to Ansteynomad]

Hi Ansteynomad,

I agree my ferritin is too low. It has been really difficult to bring it back up since 2017 unfortunately, despite regularly supplementing with iron and it was already not that great before that either. I really wanted to believe my Hashimoto was gone when I was told to discontinue with the levothyroxine... That was back in 2010 or 2011. But I have realized that it’s most definitely not gone and I hope the doctors can bring me some answers once I manage to raise the ferritin level. Thank you for suggesting the ThyroidUK forum, I have been posting there, as well and the community is wonderful too 😊.

[Dizzytwo]

Hi there welcome I don't understand if your GP thinks your ferritin so low why have they not giving you something to correct it I wonder?

I have just looked up ferritin levels while I have no medical knowledge if the information is correct it look like your within in range.

The results may vary slightly among laboratories, but in general, normal ferritin levels range from 12 to 300 nanograms per milliliter of blood (ng/mL) for males and 12 to 150 ng/mL for females.

You say yours were 27 so not that low according to the information.

Have you spoke with your doctor about your health and blood concerns? I hope you find some answers soon xx

Momo

[Seahorse76]

Hi Momo,

Thank you for your welcoming message and your kind words😊.

My ferritin is technically in the normal range, yes. However it is too low for me to feel well and the doctor gave me an iron supplement as she wants me to be at least over 50. I only started this supplement a few days ago, but hopefully it will help. I spoke with the doctor(s) about my issues but still searching for the answer. I will post again once I get a diagnosis.

[Dizzytwo in reply to Seahorse76]

Fingers crossed it helps you feel better soon xx

[Seahorse76 in reply to Dizzytwo]

Thank you so much Momo😊Sorry for my delay to answer: I live in Canada. Hugs Aline

[Midori]

Hmmm, could be either CFS or Fibro; the symptoms are similar in both cases. It is better to wait for the Rheumatologist's diagnosis, really, as we can only speak from our own experiences. I don't think there are any doctors here, a few nurses, or former ones in my case!

[Seahorse76]

Hi Midori, thank you so much for your input 💛.Yes, I will have to wait for the rheumatologist now. Trying not to think about my health concerns too much but hard to ignore... I have also been wondering if all my symptoms could be due to my thyroid ( Hashimoto’s diagnosed in 2009)untreated since 2011 because of normal levels of tsh and dropping but still low normal level of FT4😅. Anyways, I will update when I know more.

[klr31]

Are you back on thyroxine? Hashimoto's doesn't go as far as I know. Your symptoms could be due to your Hypothyroidism. What treatment are you on?

Karen

[Seahorse76 in reply to klr31]

Hi Karen,

No I am not back on thyroxine, but really hope I will soon. I was treated with 50mg levothyroxine for a year and a half and then lowered to 25 and stopped. I have an appointment with a different doctor next Thursday and I will bring my “health log” with the graph that shows my FT4 steadily declining those past few years (from 18 to 11.7 in past 5 years.) I really hope she will decide I need to be treated again.

[klr31 in reply to Seahorse76]

You need to take control as much as you can. I doubt that you should have stopped your thyroxine. What reason were you given? Your symptoms could be due to not taking thyroxine. Many doctors don't seem to have a clue what they are doing with thyroid issues.

Karen

[Seahorse76 in reply to klr31]

I wish I never stopped to be honest... I was diagnosed with Hashimoto’s while I was still living in France and moved to Canada a few months later. The stress of moving to a new country and speaking a different language really took a toll on me and my thyroid: I started to feel very nervous and anxious, kept losing weight and throwing up for no reason every morning for 6 months straight, and felt too hot. The doctor I saw at the time thought I was taking too much thyroxine so he told me to lower the dose. The symptoms persisted so he told me to stop completely... And it persisted... So the doctor actually gave me antithyroid medication for a few months! I wish I had known better at the time.

[klr31 in reply to Seahorse76]

Did you have any blood tests to check what your thyroid was doing or was it just on symptoms?

Karen

[Seahorse76 in reply to klr31]

I did (and had to insist and go back twice to get the FT4 and not just tsh.) My FT4 is the lowest it has ever been despite still being technically in range:

11.7 for a range between 10.7 to 19.7

When I was diagnosed in 2009, it was at 14 and went up once started medication.

My TSH is always around the same: 1.6 to 1.81 on latest test. I went to a different doctor who decided to test one kind of thyroid antibodies ( TPO) but those ones have always been negative, even when I was diagnosed.

I never re-checked my anti TG antibodies though and those were elevated in 2009.

Because everything is in range, doctors have told me it can’t be my thyroid...

[klr31 in reply to Seahorse76]

Sometimes the brand of thyroxine can affect some people badly too so it's worth trying another brand.

Karen

[Seahorse76 in reply to klr31]

That could have explained my symptoms as I believed I changed brands a few months after I arrived.

[klr31]

CFS diagnosis can often be mistaken for thyroid problems. Low ferritin, folate, D and B12 all are common amongst people with thyroid problems. Positive ANA too - I have had that in the past.

Karen

[Seahorse76 in reply to klr31]

I have reached a point where I feel so close to getting a diagnosis but feel like I am talking to a wall when seeing doctors... This is so frustrating.

[Seahorse76 in reply to klr31]

I did check my b12 level a few weeks ago and it seems better: I was a bit lower than usual but supplementing helped. I checked the vitamin d in March and it was good, but the iron always goes toward the low side. I don’t know for the folate however I eat so much folate rich foods that I don’t think that could be it. Thank you for sharing your experience with me, it helps me regain confidence concerning my health.

[klr31 in reply to Seahorse76]

So many people seem to go through a similar thing when trying to get diagnosed. Doctors seem to not have the knowledge - or enough of it - to help people with thyroid issues and they don't seem to fully understand everything around it. If you can't get your doctor to check your blood, can you afford to go privately? Always check your results yourself too - don't rely on doctors' interpretation as 'normal'. The thyroid site on here is very good for information too. Good luck and I hope you soon get to the bottom of things.

Karen

[Seahorse76 in reply to klr31]

I can try a different walk-in clinic here in Canada( That’s what I do when I feel I have no hope of being helped by the doctor.) I don’t have a family doctor but currently on a waitlist to find one.

The alternative here is to see a naturopath that can prescribe natural dessicated thyroid. Unfortunately, appointments are extremely expensive : about $200 for first session, plus cost of blood tests, plus cost of treatment and cost of follow-up... I can’t afford it. That’s why I want to try again with the doctor who diagnosed me with CFS last March. I haven’t seen her since. Hopefully she takes pity on me😅.

Thank you so much Karen for all your messages and kind words. I will let you know if/when anything new happens 💛

Aline

[klr31 in reply to Seahorse76]

Yes, please do and all the best.

[Seahorse76 in reply to klr31]

Thank you Karen. Today was particularly bad but going to bed and tomorrow will be better. I wish you all the best, as well.

[Seahorse76 in reply to Seahorse76]

Hello Karen,

I forgot to let you know about my latest updates ( happened yesterday 😊).

I had an appointment with the doctor to hopefully receive prescription for thyroid medication. I didn’t get any prescription “because I have CFS” according to her.... However, I received info that a CT scan of my thyroid done 2 years ago showed I still had a nodule on the left side and that the left side was also absorbing more iodine than the right side. Nobody has told me...

So I was not very happy and went to another clinic and got prescription for dessicated thyroid 30mg😊! I still can’t believe it happened... I am so grateful.

I will start taking the thyroid pill soon but hoping to raise my ferritin levels a bit more first as I read it could cause heart palpitations otherwise. I also have an ultrasound in a week and worry that if I start treatment now it might interfere with the ultrasound results. So good news overall and I am thrilled!

Wishing you all the best and Happy Holidays 💛💐.

Aline