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Fibromyalgia Chronic Fatigue Syndrome & Restless Legs

Maynan17 profile image
23 Replies

I was diagnosed with Fibromyalgia 4 years ago which has gradually got worse. Am on medication Fluoxetine/Tramadol but doesn’t really help if I am truthful.

Am wondering if I am also suffering with Chronic Fatigue syndrome as I tick all the symptoms related to this.

Also Restless legs worsening & suffering with involuntary body jerks & twitches on a daily basis.

I was referred last March to a Neurologist but as yet no appointment and have been told may be waiting more than a year.

Have under active thyroid too & menopausal.

Everything is affecting my sleep & mental health. Usually I am a strong individual who can cope but feel weak and at my lowest right now.

I am seeing the Dr today about it all but wanted to reach out and ask if anyone else here suffers the same and how you manage day to day. Not sure how sympatheticGP will be or if in deed there is anything they can do to help me but worth the 6 week wait to see them all the same even if it’s just a matter of speaking to them about it all.

TIA.

23 Replies
Blearyeyed profile image
Blearyeyed

Fibro is quite commonly linked with CFS and restless legs , and it is not uncommon for these things to flare if your thyroid is not well managed , and because of hormone changes during menopause.Unfortunately, it means it can take quite a bit of trial and error to get the right combination of self care and medication to ease the symptoms, but it is possible.

Are you getting a thyroid panel done as part of your appointment, or have you had one recently?

Often getting your doses right for thyroid issues can stop this problem triggering flares in your other health issues .

It would be a good idea to ask for some other blood tests , which is your right to do , to get a baseline of results and see if any nutrient issues are adding to your increased symptoms.

Vitamin B 12 deficiency or low B 12 and increased neuro and thyroid dysfunction are closely linked. It can also be the cause of more fatigue , and restless legs and weak muscles , especially if it also causes Anaemia.

Folate deficiency can have a similar effect to B12 deficiency.

Vitamin D deficiency is another common issue with Fibro and thyroid dysfunction.

Low magnesium or sodium / potassium imbalance can increase neurological symptoms , spasms and restless legs.

It isn't uncommon for Fibro and thyroid sufferers to have low nutrient levels even if they have a good diet and take a standard combined supplement. These health problems can cause reduced absorption of nutrients and increase the bodies use of them as it continually washes the system with nutrients to help heal itself. A double whammy of a sort.

The tests that may help you are Vitamin B 12 , Folates , Ferritin/ Iron panel, Electrolytes, Vitamin D and Magnesium. You have the right to request these tests and you can explain the reason to your GP as concern about possible deficiency making your symptoms worse so you want to be proactive in improving them. If you are low or deficient you should be prescribed supplements or injections.

All of your conditions if not well managed can effect your sleep. Sometimes an antihistamine taken nightly can help with that as well as a bedtime routine which relaxes your system . Magnesium spray or lotion on the legs and raising the feet on pillows can also reduce twitches.

Are you on or have you considered HRT , or an HRT alternative to help reduce Menopause symptoms?

It may be of help to try it.

It takes time to find the right combination of pain medication and if your current combo isn't working you need to request to try other options.

Opioids like Tramadol don't work for everyone and can cause more Fatigue and Brain Fog.

You could try tapering off that while slowly adding in something like Garbapentin or Pregbalin to see if it is more helpful.

Duloxetine is also quite good for many people , especially in combination with Pregbalin and standard doses levels of paracetamol.

Getting referred to a physio with Fibro and Fatigue syndrome experience is also helpful in finding the right activity and exercise regime to help reduce the pain and fatigue.

It can be hard to get everything out at an appointment but don't let yourself be rushed. Write a check list of things you want to ask for and tick them off as you go it stops the brain fog from making you forget something important . If the GP appears to want to end the appointment before you finish use what I call the " Columbo Tactic" , and say ,"oh sorry , but just one more thing..."

If you can't fit in all the things you want to discuss with them in one go ask them if you can come to them again to go over your results and to discuss the next thing you want sorting out. Get them to agree to that with a time frame and then sort it out at reception telling them that the GP has asked for you to come back and see them in ..... , the receptionist can't really put this off and it gives you some continuity in your care.

Hope that helps , good luck with the appointment.

Maynan17 profile image
Maynan17 in reply to Blearyeyed

Thanks for your well informed reply.

I have seen the Dr this morning armed only to leave unimpressed with her lack of empathy & bedside manner to the point quite rude! No compassion & made to feel like I was a hypochondriac with my list of issues!

Would not prescribe any medication for RLS only to suggest tonic water as it contains quinine and a warm relaxing bath before bed.

Is however screening for deficiencies but not all, only VitD, Folate, B12,TSH.

Asked for a follow up to discuss results and she declined & they will only contact me if any abnormal. Otherwise wait for my neurology appt which she cannot expedite. The alternative is to go private.

Would not change medication for Fibro but just increased dose of Fluoxetine from 20 to 40mg & confirmed my suspicions that CFS is Fibro. No referral to a pain clinic or physio either.

So overall I feel I was not treated as I thought I should have been, maybe I have too high expectations.

Our NHS is broken and for someone like myself who works in the NHS giving care to others I feel very let down.

Suffice to say I have received a satisfaction survey of my experience today and have given them a poor result.

Thank you again , felt more comforted in your response than Drs!

Blearyeyed profile image
Blearyeyed in reply to Maynan17

Your GP needs retraining . If they are under 70 and still think it's worth prescribing tonic water as a cure they shouldn't have qualified in the first place.The amount of quinine in good tonic water hasn't been medically significant for decades , and most cheaper versions have an artificial variant to create the flavour. Add in the fact that carbonated drinks and artificial sweeteners can actually make rest legs and body spasms worse you probably see my point about their ignorance.

At least you are getting some blood tests done but I'm very surprised that she chose not to do Ferritin/ Iron and kidney/ electrolyte as that is a more common choice by GPs with your symptoms.

If you are also on the thyroid forum you will know just getting TSH tested is no good for really understanding what drugs or doses to use for thyroid illnesses.

You should be able to go into your surgery in a couple of days to pick up your blood test results. It's your right to do so tell them you are coming in to get them and for them to have the tests printed ready as you will fill out the consent form when you arrive. It's best to get copies of all blood tests and hospital letters to keep in a file if you have a number of issues so you refer back to them at appointments and chase up care that may not have started.

Your doctor's biggest mistake. Fibro is not CFS they are two different illnesses with similar illnesses that can commonly happen at the same time , sometimes triggering flares in each other. Fibro is a neurological condition causing pain , fatigue and Autonomic Dysfunction because if impaired nerve messaging and hypersensitivity which can often be improved with exercise , self care and medication.

Chronic Fatigue Syndrome can cause pain in a flare or if you overexert the body but the symptoms of Fatigue are more common to it. Although activity and exercise are needed to help the whole body with CFS it is harder to find a comfortable activity level as too much exertion causes the flares . CFS can have some of the autonomic symptoms of Fibro but this is not as a common a symptom.

You can have both conditions , or one or the other , but they aren't the same.

It's like saying it's the same thing if you break one bone in your leg as it is to break two. If you only treated one of the bones the leg wouldn't get better.

Have you got other GPs at your surgery you can request to see instead next time. You are still allowed to request a specific GP if it for a non urgent appointment although it can take a few weeks to sort out. I found it took trial and error to find the only useful one for my issues. I ask to speak to him on the phone first to make it easier then he tells me to come in.

Try the increase in Fluoxetine and after a few days try bringing in paracetamol at the standard daily dose a couple of times a day. Write a pain diary for a couple of weeks whilst on that. If you want to contact me on private message for more help with this and your test results when they arrive I should be able to give you more help with that then.

Are you on medication for hypothyroidism, which one?

Did the GP reject HRT? !!

Maynan17 profile image
Maynan17 in reply to Blearyeyed

Thank you again for your time in response to mine.

Dr I would say is early mid 30’s & Yes couldn’t believe the advice of tonic water for RLS . As you confirm and I have since researched not medically used in decades. I do not like carbonated drinks either so will not be drinking it!

Minds think alike and I am going to book another appt with a different GP for a second opinion on some matters like RLS after I have received BT results in the hope they will prescribe a suitable medication for relief. I am online with my patient record so should be able to see them there hopefully in a couple of days.

Think GPs need more retraining on the difference between Fibro and CFS as I did think from the little research I have done that they were not entirely the same.

When I was diagnosed with Fibro by a rheumatologist I was not told I had CFS.

Thank you for heads up on taking paracetamol once started dose increase of Fluoxetine and good idea to keep pain diary too. Fingers crossed I will get some benefit.

As for hypothyroidism I am on Levothyroxine 75mg.

I am already on HRT patches - Estraderm 100 due to surgically induced menopause by full hysterectomy.

Will accept your offer to PM you with results if you’re ok with that , thank you

So so grateful for your help today 🙂

Blearyeyed profile image
Blearyeyed in reply to Maynan17

I got it for years with my Ehlers Danlos Syndrome too , consultants unwilling to properly test for EDS typing as I had already been diagnosed as Severe Generalised Joint Hypermobility Syndrome and they still work under the illusion that they are the same thing.Believe me , there is a difference , JHS has various causes and is treated with no respect by doctors , EDS is a Connective Tissue Disorder and effects any part of the body made up of connective tissue , not just joints and movement, and it's diagnosis can prove the reason for many different issues linked to connective problems , like Fibro , IBS , gynaecological problems , heart issues etc.

Without the diagnosis on your chart you can't get the extra help in hospital care and they don't believe that local anaesthesia doesn't work on you.

Diagnosis us key to us all , as we can research what we have and what we can actually request for in our care with paperwork to prove it.

Please contact me by PM with your results even if they are in normal range ,,I should be able to give you more advice about what to push for next from there , take care , Bee

Blearyeyed profile image
Blearyeyed in reply to Maynan17

I had to have full hysterectomy at 40 likely to be linked to the EDS too. I'm on the HRT equivalent Livial.If the HRT was working previously the flare in symptoms definitely could be linked to poor nutrient absorption or the need for better thyroid management. We will see when the results come back.

Take care , Bee

Delightedbyhares profile image
Delightedbyhares in reply to Maynan17

Ooh, your post could have been written by me! I have exactly the same combination of symptoms and conditions(with a blood cancer thrown in for good measure) The only thing I can add is that I take Amitriptyline (50mg) in the evening, which does help a bit with the restless legs, body twitching and allows me to sleep a bit. It’s still a pretty non- restorative sleep but, at least I’m not wide awake, tossing and turning and feeling totally miserable until the sun comes up!

Good luck with your search for an understanding doctor. There are some out there I promise you-mine is fabulous .

The only other thing to add is that, the healthunlocked Thyroid support and information group is great. Join up if you haven’t already done so! All the very best and just know you are not alone!!

SlothMode profile image
SlothMode

Hiya Maynan,

Yes fibro does chuck all of those symptoms n more at us! I also have nerve damage to the base of my spine n this causes tremors n twitches especially when sitting in a chair. I would advise seeking Acupuncture as that is what I did. It really helped with the tremors n twitches n I am now able to perch on a chair. As for your doctors attitude most of them haven't got a clue how bad fibro really is! They tend to shove us in a corner as they can't cure us. Ask to be referred to the Pain Management Centre, mind u mine was terrible. Gentle hugs 😊🤗

Elizahl profile image
Elizahl

I don't have much to add other then to empathise I think most was covered already by others. One thing though there are fibromyalgia stretches on YouTube someone here recommended for me when my legs were driving me crazy if you do them late evening it helps with restless legs. It's only simple movement nothing strenuous but does help. I hope you have better treatment with the 2nd gp and demand a full blood check not so specific. Also hrt may need tweaking as often you have to play around with that to get it right. Check out Dr Louise newsom podcast on Spotify if you can and the balance app she developed it may help. Good luck going forward I hope you find something that works for you x

Maynan17 profile image
Maynan17 in reply to Elizahl

Thank you for your kind words of support, I will certainly look at YouTube link & podcast, much appreciated 🙂

Macdoual profile image
Macdoual in reply to Elizahl

Thank you for mentioning you tube exercises, I am definitely going to have a look at that, rls drives me insane and like others have said sometimes it goes through my entire body. Take care

1whitestar profile image
1whitestar

Hi I was diagnosed with fibromyalgia April last year. Bean in and out of my work . Every day is painful If I do to much I'm layed up in bed for 4 days or more. I try to do more little by little on a good day. But now the fingersband toes swell up on a flare up. They are warm and itchy. I have problems with my feet this week so painful to walk on . I go for an xray and going to rumerthogly again. To see what they say.

Maynan17 profile image
Maynan17 in reply to 1whitestar

Bless you , it’s a nightmare isn’t it. Wishing you good luck with appts. 🤞🏻

Sammyd66 profile image
Sammyd66

hi I suffer with painful legs and restless legs my gp prescribed Pramipexole for restless legs which is helping at the moment maybe ask gp to try Good luck

Maynan17 profile image
Maynan17 in reply to Sammyd66

Thanks for heads up 🤞🏻

adri_ela2000 profile image
adri_ela2000 in reply to Sammyd66

Same me,I am on Pramipexole for 2 years and it is helping me with restlesslegs.Also,I take Amitryptiline and it is helping me sleep.Take care!

Mum007 profile image
Mum007 in reply to Sammyd66

please please take care with Pramipexole. It can give you augmentation and be very difficult to come off. This is no longer the advised medication for restless legs. The latest medication is to check iron levels which should be over 100 for people with restless legs and then if this is ok try Gabapentin or pregbalin.

Sammyd66 profile image
Sammyd66 in reply to Mum007

hi I’ve tried gabepentin and pregablin with no effect Thankyou for your advice tho I’m struggling with every aspect at the moment so a slight relief with restless legs is 1 less thing 😊

Mum007 profile image
Mum007 in reply to Sammyd66

as I said. Your other meds may be causing it. Worth checking.

shaws profile image
shaws

You may find the following links helpful. The doctor (died through an accident) was an expert in Fibromyalgia as well as dysfunctional thyroid glands.

google.com/search?client=fi...

Mum007 profile image
Mum007

hi maynan17. Please join the restless legs forum. Tell them all the medication you are on which I suspect is giving you the restless legs and get your iron levels checked preferably in the morning and on an empty stomach. Please read everything Sue Johnson says. Lots of people on that forum are much more informed than the doctors. Do not ask for Pramipexole as suggested.

Pain_warrior profile image
Pain_warrior

Hi, I've lived with fibromyalgia for around 30 years now along with other chronic pain conditions through stroke and arthritis. Opioids used to help in the beginning and I was often prescribed tramadol, codeine or both but several years ago it was then decided that these forms of pain relief are not suitable for those conditions as they can infact cause you more issues. A pain explained all this to me and so I then began my path of learning to create coping mechanisms to deal with my flare ups instead of turning to medication. It's been awful at times but I'm now so thankful I did stop the meds as now, my body appreciates the simple paracetamol again as at one time a paracetamol didn't do anything. Fibro has now gone in my head and face and so my doc has conceded to prescribe codeine phosphate again but only on the understanding that I only take when absolutely necessary.Listen to your body more and allow yourself to have your bad days. Medication doesn't help, it only masks your pain but I assure you, you will learn your own coping mechanisms to deal with this condition in time as it's not going to miraculously go away so it's better to live with it instead of suffering from it. ( Does that make sense?)

Sorry for the essay 🤗

bethm1983 profile image
bethm1983

magnesium helped a lot for me with this. it is horrible, so I sympathise!

also stretching my legs. if you google "leg stretches for fibro" or "restless leg stretches". i do these in bed using my dressing gown cord for some of them 😂. it really helps.

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