Do any of you have headaches which seems to start at the back of your skull? I've had them for years- and they've been much worse over the last two months. Does this go along with Lupus? Thanks for the help! Ritz
I have this type of headache, but I don't connect it to lupus. I am sure it is caused by tension. Very gentle massaging of the middle back neck and also at the base of the skull feels very good, best done by yourself as only you know of much pressure you can take initially. Also gentle exercising from side to side of the neck i.e. bringing your ear to your shoulder slowly will release some of the tension. Be careful not to do it too quickly as it will really hurt. Another I use is again slow and gentle chin to chest and then slightly back. Then head to front and gently "look over your shoulder".
All of these will be difficult at first, but with practise they will definitely ease the stiffness. Do them until you can do it 5 times each side, and maybe only twice per day. Shoulder shrugs are good too if you can manage them. You will hear cracking noises, don't be alarmed it isn't dangerous. I'm not a trained physio, but have done these routines with and for others for years. If you need to ask you doctor first this may be better for you, just so you can be assured that they are not going to harm you in any way.
I must admit with all my bits going on it takes me a while, but it does feel good he he!!.
Hope this helps some.
Last edited by goldenwings; 03-28-2005 at 06:16 AM.
Hi, Ritz. I had severe headaches during the 15 years prior to being Dx'ed. I was given drugs used for migraines (Bellergal & Fiornal).
The lupus hardcover I keep at home discusses headaches in lupus in some detail---
(1) People with lupus, it says, are twice as likely to get migraine-type headaches as compared to the general population. Antiphospholipid & Raynaud's patients seem particularly at risk.
(2) Other headache causes should be ruled out, e.g., high blood pressure, osteoarthritis of the neck, Fibromyalgia muscular tension headaches, medications, cerebral infections & other pathology (tumor, aneurysm, etc.). An MRI may be warranted to rule out certain of these other candidates.
(3) Lupus headaches are initially treated with migraine meds. Where those fail, people with lupus headaches may be helped greatly by a Prednisone trial, whereas people with "straight migraines" would not respond to the Prednisone.
I hope you get some help soon whatever the cause. The big headaches are real show-stoppers, aren't they?! Bye for now, Vee
Goldenwings, and Veej,
Thanks for the info! The headaches started when i was hit hard 20 years ago by my worst joint/muscle attack-- and they have continued since that. They were manageable with rest, and over the counter pain meds, until about two months ago. I've been working for a year and a half, and the headaches really get to me, and come with the fatigue. Thanks for the info- i will try the exercises -- thanks again for all your help. Yes, Veej, the headaches are real show stoppers. They get so bad i feel sorry for my hubby, cuz i get a bit crabby! I'm glad he's very patient! Thank you so much! Ritz
Thanks for the response! I am not on Lupus meds, no dx yet. Going back to my rheumy in May(soonest i could get in again). I don't grind my teeth. The headache always comes with neck pain, i think there's a joint in there which gives me lots of problems, and sometimes my shoulders hurt at the same time too. I'm going to try those exercises that Goldenwings gave.
sometimes too much movement of my joints makes them worse, but i'm going to take it slow. When i go back to the Rheumy i've got alot to ask for! I've learned so much about my symptoms on these boards. I am going to ask for the blood tests for Sjogren's, and i won't wear makeup to the apointment(my face rash is really really red- i look like i'm sunburned- yet i live up in the UP of Michigan where it stays winter a long long time ). My family doc also dx'd me with a goiter. He put me on thyroid meds about two years ago, even though my hormones were normal. He took me off though after awhile-don't know why. I actually had felt better while on them, unless it was a coincidence. I was so amazed to learn on these boards that thyroid problems can be auto-immune and go together with some of the other things that are auto immune. All these pieces are fitting together in my mind- it is giving me so much peace of mind to know that things might finally all be sorted out someday. Thank you Veej, and Goldenwings for all your help. Hope that you will be given much strength to endure- i believe in prayer, and will pray for you. Ritz
Just another thought. If you can buy a small size wheat bag or that type of thing that you put into the microwave and gently heat , and place that at the base of your skull, that might give you a little bit of relief. Or, ah ha, a small towel or face cloth heating it perhaps over a radiator or such like, and place it dirctly onto your affected area. Please do make sure you don't burn yoursef though won't you?
It's horrid not knowing how to relieve pain like this isn't it? Also, don't forget, gentle does it with the exercises.
Last edited by goldenwings; 03-30-2005 at 03:39 AM.
Goldenwings and Veej,
Thanks for the additional info- i've been taking it slow on the excersises, and so far so good- it actually feels good- don't know if it's just coincidence or not- but i am grateful for any relief. Thank you again Goldenwings.
Veej, your info about the different joints is very helpful. I just learned yesterday about the sternum area. I've had much difficulty with this off and on over the years.I've been to doctors, who have pushed down on it and know that the pain was there (also when i move ), but no one has ever even given me a clue as to what it was! I just assumed it went along with all my other joint stuff, cuz the pain is somewhat similar. And i guess i've been right.Thank you again- i sure can identify with the other joint areas that you mentioned. It's funny how this thing has taught me where all the joints are in my body!!!! I'm just learning more and more every day! It's all making real sense to me.Maybe someday it will to a doctor!!!!! Thanks again! Ritz
While you are waiting for your May rheumie appt. to roll around, if you feel like reading, there are several really good lupus hardcovers available in many bookstores & in most libraries, e.g., one by a Dr. Robert Lahita & another by a Dr. Daniel Wallace. (Which is NOT to say I think you have lupus... Your rheumie will be much better trained in this area of medicine... to put it mildly... )
The Wallace book discusses other autoimmunes that are seen in lupus patients, as well as other autoimmunes & syndromes that may be mistaken for lupus. I think the Lahita book does, too.
You note that it stays winter in Michigan for a long time. I live just north of NYC---and I was getting rashes in the winter. So weird. I didn't know then that it can take months for "immune junk" to build up between the dermal & epidermal skin layers. Because of the time lag, I didn't suspect sun involvement for YEARS. (Duuuuuh?) By that time, though, the rashes came on much faster.
Just thought I would chime in... Before I was diagnosed and put on Plaquenil, I had the bad migraine type headaches too (all the time). Typically behind one eye which spread to that whole side of my head. Mine too came along with the fatigue and lousy feeling. Since being on the Plaquenil from 2003 til now and I can say that I've not had one of those severe headaches. I think the Plaquenil helps to control it. I do get slight headaches every now and then, but not debilitating one like before. So, I hope you can get diagnosed and put on lupus meds. I think it really will help you with your headahes. Good luck and keep us posted.