Do these symptoms sound familiar?

[KittyB52]

I have posted in General Health and was directed to this forum for further advice.

I suffer with lower back pain which is worse in the morning and if I am too active first thing - pains in hips and upper thigh but not like sciatic pain. I also suffer from plantar fasciitis. I have recently (last couple of months) developed sore/weak hands - can barely make a fist first thing and left hand is swollen so I need to remove my wedding ring. I also wake several times as I get uncomfortable with various sore spots on joints.

Other symptoms include:

• clicky ankles
• Left shoulder pain (can't sleep on left side any more, although I often wake on that side)
• Stiff back muscles
• Stiff/painful neck muscles
• Painful spot on hips
• Light-headedness
• Clumsiness - I often wobble off balance a little as I am walking about
• IBS - mild constipation, not severe enough for me to require any medication
• despite going to bed early, I never feel like I've had a decent night's sleep
• History of infertility due to hormonal imbalance and immune issues
• Occasional vision disturbance/blurry eyes (thought this might be visual migraine)
• Occasional lapses in concentration, unable to focus on one thing, forgetful

I need to go back to GP (didn’t realise what a list that was until I wrote it all down) but have no clue what tests I should be asking for. I have had hormonal tests as I suspected I was perimenopausal (I am 44), but GP said levels were ,normal’. Vitamin D is low and I am going to increase supplement of that. I was tested for rheumatoid arthritis, and that was also ‘normal’. I saw an osteopath for my back and he said I ‘fit the profile’ for fibromyalgia.

Does these symptoms sound familiar? What should I be asking GP to do next?

Thanks in advance and sorry for the epic post.

Adding my voice to WhirlyGigWhirlyGig and endofthelinefinally who both point out that’s its not that rare to have a condition with a negative result, so much so that it’s called ANA-negative lupus. There are four things that are considered to diagnose lupus definitively: two types of antibodies and biopsy-proven kidney or skin disease. However, you can be negative for all four of these and still have every symptom of lupus, which could lead to a diagnosis of a lupus-like illness, hidden lupus, mixed connective tissue disorder, or a few others.

A good rheumatologist should be most concerned with your symptoms. As a great doctor friend always says, “We treat symptoms, not lab results.” Which is why the diary idea is such a good one because then you can give the best overview of your symptoms to your doctor. I also recommend in your diary keeping a few metrics of your symptoms, so if you have some symptoms you have every day, like joint pain, rate them three times a day on a scale of 1-10. This takes less than a minute but can be invaluable for tracking if things are ting worse, or improving due to weather/time of day/treatment/exercise levels, etc.

I’ve only just seen your thread and am pleased you are being referred to a rheumatologist. Your symptoms are very like mine and I have negative serum RA. Have done since teens. Your rheumatologist will have a range of treatments to try. It sometimes takes a few goes to find the one that’s right for you.

In the meantime it might be worth asking your GP to refer you for acupuncture. This can help with pain and is available on the NHS.

I got myself a cheapo diary the other day and was pleased with myself until I realised it was for 2019. Seriously, brain fog! I will make do with a regular notebook for now.

I have had a thyroid check done, just to rule out any potential issues. It hasn't cleared things up much but it has confirmed that my Vitamin D, folate and ferritin are too low. Also, I started looking at low stomach acid, as I never burp and some of the symptoms are familiar. Have started taking apple cider vinegar in water before meals.

So before I see the rheumatologist in December, I would like to have a couple of months taking iron and folate to see if that makes a difference.

Thanks for your replies.

I'm glad you've been referred to a rheumatologist...I suffered for 2 years with a non specific illness following a viral illness
I had iritis, joint pain and extreme fatigue...had to take 2 months off work
I had a shed load of blood tests done for autoimmune illness and they all came back negative ( RA ankylosing spondylosis, Lupus)...but a negative result doesn't always mean you haven't got an autoimmune illness!
I finally developed a skin rash and ulcers on my legs which were biopsied by dermatology and was diagnosed with vasculitis affecting the skin and small blood vessels ....I then was off work for 7 months as I could barely walk and was so fatigued - I now have nerve damage and peripheral neuropathy due to the Vasculitis attacking the small blood vessels supplying the nerves in my feet, which get painful and discoloured if they get cold
Both my mother and grandmother had RA and I'd always assumed I'd get it...never heard of Vasculitis before!
I started on high dose steroids to get the inflammation under control and have been on methotrexate for a year now...gradually reducing the prednisolone but I'll be on methotrexate for a while to come
I hope you finally get some answers...from speaking to others with vasculitis I've discovered many have taken years to get a diagnosis, as with many autoimmune illnesses unfortunately

I had many of the same symptoms you are describing and went for a zillion tests for all the things you have been tested for and they all came back normal. However, I also had some pretty significant bladder leakage issues at the same time and was referred to Mr. Panay (NHS hormone expert) who put me on Birth Control Pills for the bladder leakage. Lo and behold, all the other issues that I was having like joint swelling/soreness and back pain (SI Joint issues), and migraines and asthma etc. etc. ALL cleared up. I was in my early 40's. Then, 13 years later (this past year) a new OBGYN insisted on switching me from BCP to Hormone Replacement (which is far lower levels of estrogen) and ALL the symptoms came back within a few months: sore/swollen joints, back pain, SI Joint issues, and worst of all the bladder leakage, asthma and migraines. I eventually got my GP to put me back on the pill and refer me to another specialist who agreed that I could be on the pill at my age (55) and all the symptoms disappeared again.

So I highly recommend trying to go on the pill and see if that helps. In my case (and many of my friends) the positive results were noticeable within weeks.

Kitty, the wanting to eat things you don’t usually eat is probably pica caused by the low ferritin. My gp wants me to get mine up to at least 50, 10 as you know is the very, very bottom of the scale and many people are symptomatic at that level - aches, numbness, hair loss etc.

Stopyourhavering64 I feel that at least some of the problem is due to inflammation but there are no rashes, no swollen joints, just this aches and pains. I do have numbness and unusual sensations in my toes need investigation.

SofiaAmes that is very interesting about the pill. I have infertility issues (caused by “immune issues” but am wondering if it’s all related) so haven’t taken the pill for many years. I am perimenopausal and wondered if the symptoms could be due to that, but GP hasn’t mentioned it. Is it the oestrogen that makes the difference then, I wonder?

WrongKindOfFace I had read a little about pica, but it seemed to be more about eating unusual items like paper or coal rather than actual foodstuffs. It does make sense though. Haven’t had that feeling recently (although I haven’t cooked any salmon for DD recently either ).

Thank you for your replies.

And back again (no pun intended) after my back ‘went’ on Friday. It was set off by me perching on a chair for what I thought would be just a few minutes, but ended up being about 20 minutes of not sitting properly. Stood up, back felt sore, then went into spasm. I ended up having to sleep sitting up on the sofa for a few nights. I managed to sleep in bed last night, but am in some pain this morning (although not as bad as it was). It’s a different pain to the usual back pain, and on the other side. Have made notes for the rheumatologist appointment.

Such fun!

I could have written your posts, the sensation you mention in your toes, is it an itching, burning sensation?

Look at vitamin d levels too.

Therewere5inthebed It varies. Sometimes needle like pains - not pins and needles but a sensation of being stabbed with a needle in the ends of my toes. I get the same feeling sometimes in my heels. Other times it’s a sensation of having something stuck in between my toes.

Lara53 my vitamin d level was ok when last tested, but that was after a sunny summer. I am taking an oral spray at the moment, and will see what the rheumatologist says in December.

Hi kittyB52 I came across your thread last night and was most surprised to see my earlier post from July! I'm still impressed at your proactiveness with your gp; I've given up fighting for further investigation and have decided to get a private consultation to try and get to the bottom of my fatigue. I'm starting to get low and feel that is caused by fatigue, rather than attributing everything to low mood. It's not normal and I want to live life, not just exist and I know I'm lucky to be able to afford an alternative option.

I hope you too get some answers

I hope you get some help soon, Misty9. I have noticed that the joints in my fingers are a little sore now, although they don’t look swollen. I notice it more as DD likes to grab my hands occasionally for balance when she’s tottering about.

Sounds like underactive thyroid to me. The TSH test doesn't tell you anything. If docs wont run other thyroid blood tests you can go provately through medichechecks which is what i did after getting fobbed off and Endochrinologist dumping me! It costs around £200 for comprehensive blood tests and there will be a doctors comment too. I then took to FAcebook to find THyroid/ Female hormone groups for further info/help. After 10+ years of ill health I'm getting there. Def need vit B12, iron and VitD levels tested.

Hi Lara, I have had a thyroid check done by Medicheck in September - the doctor who reviewed my results said they all looked normal.

TSH: 2.53 [0.27 - 4.29]
Free Thyroxine: 13.200 [12.00 - 22.00]
Free T3: 4.7 [3.10 - 6.80]
Active B12: 69.6 [25.1 - 169.00]
Folate: 3.78 [2.91 - 50.00]
Ferritin: 16.5 [13.00 - 150.00]

Same here kitty - got my private results back and all bloods in normal range, albeit towards the lower end for thyroid ones. So back to square one. Maybe I'm just lazy

I don't have the info I was given on me so I'll try to post it later which will hopefully help you x

found something :Patient experience in my Facebook groups shows

TSH - under 1.5 is optimal - yours is a little high
Free T3 - upper quarter of range optimal - yours is ok
Free T4 - middle/high end of range optimal - yours is low
Ferritin is low - goal of 50, but ideally 70-90 for women.
folate - is low - needs to be above 13.5
Active B12 - optimal would be top of the range - yours is low

I see that you have not tested Vitamin D(storage D 25-OH), Reverse T3 or Thyroid Antibodies - TPO - Thyroid peroxidase antibodies

In your shoes I would address deficiencies first with good quality supplements and get Vit D tested

I can give you info about the Thyroid groups on Facebook if you like.

I also found reading the book Stop The Thyroid Madness 2 very helpful.

I'm also on Natural Dessicated Thyroid medication that I buy myself as I was getting sicker and sicker on Levothyroxine. My overall health has improved immensely with addressing severe Vit D deficiency and Adrenal and sex hormone issues - I can now sleep longer than 2 hours too

Hi Lara. I had my vitamin D tested by GP - it was 83 in August, but that was after we’d had weeks of sunshine. It has been around the 30 mark when tested in winter. I am using a sublingual spray at the moment. I am also taking a gentle iron supplement.

I haven’t had the reverse T3 test, but have had antibody tests through Medicheck:

Thyroglobin antibody: 12.4 [0.00 - 115.00]
Thyroid peroxidase antibodies: 10.5 [0.00 - 34.00]

I am assuming (perhaps wrongly) that the rheumatologist will do more blood tests in December so was taking iron and vitamin d for a few months to see if that made a difference.

I would be interested in the Thyroid FB groups, please. I will look into the book too.

Thank you for your help.

Hi Kitty, I have him pain with stiffness. I also get stabbing pain in my thigh. I get the sensation of tiny needles all over my body. Spasms in my bum cheeks and hands. Burning sensation in arms and soles of feet, and random electric shock feeling. I also find it difficult to walk over the pain in my feet. I ache all over, wake up most mornings stiff, sore and wrecked tired. I get terrible brain fog, heavy head, ibs, and tightness in my chest like someone is squeezing me to tight. Light activity leaves me sweaty, clammy and breathless. Climbing the stairs can be difficult. Then I get a day that I feel normal.again,this might last for a day or a couple of days but never last. All bloods came back normal both doctor and rheumatologist has diagnosed fibromyalgia. Definitely keep a diary but be prepared if they diagnose fibromyalgia then every symptom from then on will be blamed on this.

Also forgot to mention my eye sight, I'm suffering with blurry vision. Today I woke up and couldn't make out any of the words on mumsnet, it lasted a few hours but has gone now. Somedays i wake up feeling that I did a major workout even though I can't even go for a small walk anymore. I have always been clumsy so no difference there.

Thanks, Eenymeeny123. I noticed the other day that when I hold a mug, my fingers feel a bit sore. Which isn’t right.

I’ve also been suffering from seasonal allergies for the last few weeks, and bad heartburn the last few days. So much fun!

So yesterday I had my first appointment with the rheumatologist yesterday. She started from the position that my GP had referred me due to fibro, which threw me a bit. She asked what I wanted from the diagnosis and how I thought it would help. I wasn’t really sure what to say other than that I wanted to know what was wrong with me.

Anyway, after asking me lots of questions and examining me, including an ultrasound of my hands, she said she wasn’t 100% sure that there was something inflammatory going on. She recommended a steroid injection to see if that helped, and I had loads of blood taken for various tests. I have to go back in 6 weeks to a clinic to see if the injection helped at all. She did give me a leaflet about fibro.

So I am going to continue with the iron tablets and Vitamin D sorry I have been using, but am not taking anything else until the 6 weeks is up, otherwise I won’t know if the injection is working.

Update: Steroid injection made no difference whatsoever. No relief from aches and pains, no surge of energy. What a pain in the bum (literally).

Blood tests all came back 'normal' so I asked for a print out. Everything looks OK, except I still think i am borderline anaemic (MCV and MCH barely in range). No-one seems remotely interested in that, so I have continued with the iron tablets, which haven't made a difference to how I feel so far. I am feeling so low I was considering starting to eat meat again the other day after years of being vegetarian.

I am going to be starting on hydroxychloroquine for 'connective tissue disorder' as soon as I can be arsed to take them (am getting a cold so don't want to start something that will potentially give me side effects).

I had my asthma review today and the nurse not only told me off for not taking my meds correctly (I sometimes wander off to do something else after one dose of inhalers and forget to go back ) but told me to see my GP about my 'chronic rhinitis'. So I am seeing the new GP in the hope that he might look into the blood tests a bit more carefully.

Can you tell I am fed up?

@Eenymeeny123 you just described my life!! Fibro is a shut diagnosis my drs haven't treated me seriously in 10yrs thanks to it.

I hope it's not fibro Kitty it's not easy to live with